108 – Nik Nikic’s Son Chris Who Has Down Syndrome Is Training for Ironman Florida – 1% Better Every Day

Transcript: 

Dad to Dad 108 – Nik Nikic’s Son Chris Who Has Down Syndrome Is Training for Ironman Florida – 1% Better Every Day

Nil Nikic: We, we protected him more and did more for him, which actually enabled him to become less light. So we were the cause of his lack of growth. Right. We weren’t helping, we were hurting him. And, uh, one day I said, we’re going to change it. And I started telling everybody around him, I need you to stop treating my son. Like he’s got special needs. I need you to treat him like he’s special. Like he’s gifted.

Tom Couch: That’s Nick Nickic, a father of two young adults. One of whom Chris has down syndrome. Nick has developed a method to help Chris achieve incredible goals, like being a triathlon athlete and a public speaker. It’s a great story. And it’s all on this Special Fathers Network, dad to dad podcast. Here’s our host David Hirsch.

David Hirsch: Hi, and thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of children with special needs presented by the Special Fathers Network.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process.

New fathers with special needs children connect with mentor fathers in a similar way. It’s a great way for dads to support dads, to find out more, go to 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad.

Tom Couch: So let’s listen in now on this conversation between special father, Nick Nikic and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Nick Nikic of Maitland, Florida, who is the father of two, a business owner who had a recent epiphany to help his son who has down syndrome unlock his potential. Nick, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Nil Nikic: My pleasure. Thank you.

David Hirsch: You and your wife, Patty had been married for 34 years and other, the proud parents of Jackie 30 and Christopher 20, who has down syndrome. Let’s start with some background. Where did you grow up? Tell me something about your family.

Nil Nikic: Sure. I was born and raised in Montenegro. My parents out of the age of 10, decided to move.

We lived in a small rural village. Didn’t really have anything. And, uh, we wanted to experience the American dream. So, um, they got a visa. We came to the U S and uh, started our life here at the age of 10.

David Hirsch: So when you moved from Montenegro, which I. We’re called Yugoslavia for those that might be geographically challenged like myself.

Nil Nikic: Where was it that you came into the U S so we flew into New York. We had some other family that had made it here before us, uh, helped us get settled in. We ended up living in the Bronx in New York. My parents were not and got a job. My mother got a job cleaning office buildings at night from six at night till, um, Four or five in the morning.

And my father worked in apartment buildings, essentially doing physical labor, cleaning, fixing things. Uh, they were both limited in terms of their education, both fourth grade educated farmers. So their life was one of just physical labor. Um, and they chose to work in different time zones to make sure that one of them was always home with us to make sure that we stayed on the right track.

David Hirsch: Wow. That’s a huge commitment. Um, you don’t see parents doing that much today. I can only imagine what it’s been like being your parents immigrating to the United States. I recall that you were the oldest of the three siblings. So if you were 10, they would have been a year, a few years younger than you maybe having to learn a new language, learn a new culture and basically restart.

It sounds like an amazing journey.

Nil Nikic: Yeah, it was fascinating in hindsight the first year, when you come to a new country, everything’s a blur because you don’t understand anything. It’s a completely new language through immersion. You start to pick things up a little bit at a time, and that’s how it was for us.

My brothers and I picked it up within a year. Um, my parents seemed to struggle for 20 or 30 years, even today. My mom’s still alive and she speaks very well. Um, Uh, but it took her a much longer to get acclimated and get comfortable.

David Hirsch: Yeah. Well, thanks for clarifying that you had mentioned your dad or both of your parents didn’t have more than a fourth grade education.

Um, is your dad still alive? Uh, what did he do while he was here

Nil Nikic: in the U S yeah. So my dad was a superintendent and, you know, fix things in buildings. Uh, that was his job. Um, he passed away, um, almost 30 years ago now. Oh my gosh. Yup. My mom’s still alive.

David Hirsch: How would you describe your relationship with your dad?

Nil Nikic: You know, it was interesting. My, my father, um, not having the education was interesting because it didn’t take long for me, uh, from an education perspective to learn more into it, to know more, but in terms of, uh, his example, uh, it was amazing started button.

I still get choked up thinking about them.

David Hirsch: That’s amazing at, and since he’s been gone for almost 30 years, it just as a testimony to the influence that he had on your life.

Nil Nikic: Yeah, for sure. He was, he was an amazing man, essentially. He was the love for his family and for us and the sacrifices he was willing to make for us is really what I got out of, out of our relationship and all those who just.

I know he would do anything in the world for

David Hirsch: us. Yeah. Well, not having known him beyond the conversations we’ve had. It’s very clear that he was a very courageous person to be able to move his family from one country to the next and start over with very limited, you know, educational background. And it sounded like both your parents had an amazing work ethic.

Right. They were very dedicated to. Providing for you and your brothers. And, um, sometimes it’s not the words that they speak, but the example that they leave that is more impactful. And it sounds like your dad was one of those, you know, sort of the actions speak louder than words type of person.

Nil Nikic: Oh, absolutely.

Both. My parents were like that. They, um, They were committed to hard work to doing the right thing. They taught us that they taught us to dream. You know, I remember my mom from the, you know, back in Yugoslavia when I was in the sixth grade, sixth grade, she sat me down. Yeah. I still remember as if it was yesterday.

And she said, someday, you’re going to be an actor premiere. She said, you’ve got to work hard. You got to study and you’re going to be an engineer and you’re going to be successful. And she planted on my brain from, you know, Uh, from what I could remember back in the, in the village and a little of the whole, you know, um, 20 years later, or, you know, 15, 16 years later, I ended up going to Johns Hopkins.

I got a degree in electrical engineering and computer science, and it’s amazing the power of, of, uh, planting seeds in someone’s mind. And then, um, talking to them about what they can do and, and, and helping them see the vision of what’s possible and setting them in the right direction. And both my parents did that and they, they put us on a right path and they believed in us and.

Uh, and they encouraged us to just study hard and work hard to achieve our dreams.

David Hirsch: Yeah. Well, that’s fabulous. Thank you for sharing out of curiosity, did either of your grant fathers on your dad or your mom’s side play a role in your

Nil Nikic: life? Yeah. Um, between the age of zero to six, I actually lived with my grandmother and, um, and my great grandfather on their farm because my parents couldn’t afford to feed me.

Um, they had their hands full, just, you know, taking care of my two little brothers. So I spent quite a few years just living with my grandmother and great grandfather. So he was a big influence. So was my grandmother. And then, you know, by the age of six, my parents were a little bit better off and then I moved back and lived with them.

David Hirsch: Okay.

Nil Nikic: Things were pretty rough.

David Hirsch: I was going to say, it sounds like you came from some pretty humble or very modest

Nil Nikic: beginnings. Yeah. When I was between six and 10, I lived in a house, um, that we had on our farm that my father and his brothers built basically collecting rocks from around the mountain. And then they essentially built a, what was about, uh, a 10 by 16 foot house, one room for the five of us.

No running water, no electricity, no anything. It was just kind of like a hot that’s how we lived for three or four years before we moved to the U S

David Hirsch: wow. That is amazing. Well, again, thank you for sharing. And, um, you know, I think that part of what keeps people grounded is knowing where they came from and the humility that goes along with that as well.

Thank you. So you mentioned that you went to, um, school at John Hopkins. You took a degree in electrical engineering and computer science. And I’m wondering, where did your career take you from there?

Nil Nikic: Someone told me that if I got into technical sales, I can make a lot more money a lot faster than if I went into engineering and I had a much better longterm career.

So I actually got into sales, uh, right out of college. Because I’m an engineer, I’m very logical. And so sales was never logical to me, but I became a really ardent student of it. I started studying the cause and effect of sales and how to actually make it more tangible and over I’m about a 10 year period.

Um, I started to document and figure out how sales actually worked to the point where the last four or five years. Um, I experienced enormous success. All right. And I got to a point where I said, look, I could teach other people how to do this. This is, this is actually pretty easy now. And that’s when I left the corporate world and became a sales transformation consultant.

David Hirsch: And what’s the name of your business?

Nil Nikic: A sales optimizer. Okay.

David Hirsch: I’d like to switch gears and talk about special needs first on a personal level, and then beyond. So before Chris was born, did you and Patty have any experience with special needs?

Nil Nikic: We didn’t even understand that. And when Chris was born, we had no idea what down syndrome was. Uh, you know, once we got over the shock and the lack of understanding, we started to dig in and try to.

Understand what the, what the new world meant for us. And so we kind of learned like everybody else by listening to experts from day one, was there

David Hirsch: any meaningful advice that you got early on that was instrumental looking back on

Nil Nikic: it now? Well, in hindsight, no. Um, at the time we thought so, uh, and we kept following a lot of the advice, but in hindsight, based on what I’ve learned over the last couple of years, uh, some of the biggest mistakes we ever made was actually listening to the advice and the experts that we were given.

Well,

David Hirsch: that’s a pretty strong statement. Yeah.

Nil Nikic: So, so as a young person, we try to get them included. We tried to have them go through school, how we tried to get them to participate in sports, you know, different environments to help him become part of the community. It was just very difficult trying to figure out how to get him to fit into the world.

Uh, and quite honestly, he just never fit. It was always kind of like just dragging him along and trying to make him fit into a world that wasn’t designed for him. And we kept trying to do things using the advice we’ve been given and the knowledge we had about how to navigate this world. The problem is someone with down syndrome, can’t navigate the same world.

We navigate the same way, but nobody knew how to explain to us that there was a different playbook for someone with down syndrome. Then the playbook that we were all using. And so, you know, essentially I’ve experienced about 18 years worth of frustration to get to a point where we started to figure it out.

It took me about 10 years to figure out sales. It took me 18 years to figure out downstairs.

David Hirsch: Wow. Well, it sounds like, um, it’s been a hard journey and, uh, it pains my heart to think about it, but, um, At the risk of focusing on the negative, which I don’t mean to do, but what were some of the bigger challenges you made reference to the fact, you know, you’d try to have and fit into the schools and the sports, and it just seemed like you were almost going through the motions, but without the results that you were hoping for, was there anything in particular that comes to mind that, you know, you might be able to share with other dads for that matter along the journey?

Nil Nikic: The greatest challenge. Number one was no one really understood how to make it work so that our kids, you know, they try to make them fit in. But for the most part they’re excluded, they don’t feel like they’re part of anything. And then the other biggest challenge is that everybody has a lack of understanding of how these kids learn and develop and what really works, what doesn’t work.

And so the frustration. That comes from us being, uh, on one side, trying to accomplish something and, and everybody else being on another side trying to do the right thing, but not really knowing it causes an awful lot of frustration. It’s like two people looking at the same topic from different perspectives and they’re, they’re both adamant about their perspective being right.

But the, there is no middle ground. They don’t understand each other. And so it turns into a lot of frustration and difficulty for everybody and neither side can seem to understand the other side. And that happens in life, in all kinds of areas. Right. The one we happen to experiences with kids with down syndrome.

David Hirsch: Yeah. Uh, were you describing the world of IEP or. Beyond.

Nil Nikic: Yeah, it’s the world and how the whole system work, how much we had to fight to just get little things done for the first six years of his education, we had to go from one school to another because the school he was when it was just wouldn’t work with them.

Then we tried another school in another school and we went through that six or seven times until he got to the sixth grade. And we finally found a small private school in town. Uh, and there was a godsend for us because they actually approach things very differently. And helped Chris get into a regular class and work with them.

And he has been in that school since the sixth grade. Uh, he just finished his, uh, 12th year and graduation and it was just been an absolute godsend, but the first six years were almost impossible, you know, in the last six or so years, it’s been much, much better and they’ve worked a lot better with him, but they also, what I learned over the last two years is they understood a few things, but.

But also limited him because they also had a perception what he could and couldn’t do. And so they let him, they helped him go as far as they thought he could go, which was wonderful. But it wasn’t until the last two years that I figured out that he could go so much further. And then there was a different approach to getting them there.

David Hirsch: I’m saddened to learn that it took that many years to find a. Suitable educational solution. And, um, to hear that he has made a lot of progress, even though he might’ve plateaued as a result of what you were just talking about. I’m sort of curious now. Were there any organizations, um, beyond the educational environment, special Olympics, et cetera, that Chris was involved in that helped him develop on a personal basis.

Nil Nikic: So special Olympics was, was a wonderful organization because it gave him a place to go be part of a group. And so a place to go play golf once a week with a group to go to regionals and state tournament, and he can be with others like him. So it gave him a place to belong. From my perspective, special Olympics is an absolutely phenomenal organization that gives kids with physical and intellectual disabilities, an opportunity to belong, where they don’t belong in other places.

And so it becomes a safe Haven for them, um, to, to be part of something. And so that was a godsend for us, with Chris, since the age of nine or 10, he would participate in different special Olympics events. Uh, and it was just a wonderful thing for him to be part of. Well,

David Hirsch: that’s probably where the seeds of his, that lettuce ism began.

Right?

Nil Nikic: Absolutely. Um, and a couple of years ago, three years, almost two and a half years ago, special Olympics decided to sponsor and do a pilot program in Florida to start a triathlon program. Somebody had the vision to say, you know, let’s have a triathlon event for special Olympics. We were one of, I think, four.

Yeah, right. For people who decided to be part of that pilot program the first year, it was just an interesting way to get involved in that and then to get this process started. So we attributed in a grateful to the special Olympics community for even having a vision to start something like that that gave someone like Chris, the opportunity and it planted a seed that I’ve kind of got to start it.

David Hirsch: That’s a fabulous story. Thank you. I’m sort of curious, you know, having a little triathlon experience myself, having done about 20 of these, um, but. Uh, from a much later age than Chris, I started at 28, took a decade off, did another one at 38, did a couple of year for the next decade. And, um, haven’t done a triathlon and maybe a decade, which concluded then at age 49 with the iron man.

Ironman Wisconsin. So I’m, I’m sort of intrigued by your story. Chris’s story. I’m sort of curious to know, uh, what’s the challenge is that the swimming, the biking and the running, what, what’s the biggest challenge for

Nil Nikic: him? So it’s, it’s interesting. Um, the bike, uh, is the biggest challenge because it, um, it’s affected by many of the disabilities that are naturally inherent in a child with down syndrome.

Um, someone with down syndrome can’t balance very well. So it took almost six months of holding him on a bike for him to actually learn how to ride a bike and balance himself. Wow. And he wrote very slowly. And so when he first started this, that was the biggest challenge. Now the others were challenged soon just because was, um, low muscle tone in both physical ability, you know, makes it hard to run hard to swim, but those didn’t have the other challenge of balance.

And then of course, the risk that comes with bike, riding a bike ride, the crash and fall that comes from lack of balance. And if you start going too fast, so the bike was by far the biggest barrier, uh, and the one that we really focused on trying to tackle

David Hirsch: out of curiosity, at what age did he learn how to ride a bike?

Nil Nikic: So he learned, he started learning at 16. Uh, and then what happened was he ended up having four major, uh, ear surgeries, uh, between 16 and 18. So he became completely inactive. Uh, he ended up gaining somewhere around 30 or 40 pounds of like that. So he, he, you know, got a little bigger, he gained a lot of weight and he became very sanitary.

Uh, and then, uh, after his ear surgeries and the doctor said he can start to get back to some normal activity. What was fascinating was the doctor said no more swimming because of the ear problems. Yeah. He decided to get him back into it and said, look, let’s, let’s get into that triathlon, uh, pilot. Uh, and we’re going to figure out everything and we did.

And so he kinda knew how to ride. Cause we taught him when he was like 16, but, um, we had to kind of teach him all over again when he was 18. And so the last two years she’s been really, really learning how to ride. So he went from where he could ride a bike. Two years ago at about six or seven or eight miles an hour at a nice steady state around the block to now where he can go up, you know, uh, up to speeds of 27, 28 miles an hour.

Wow.

David Hirsch: That’s amazing. Truly amazing. Um, out of curiosity, uh, during the last couple of years, since he’s been more focused on triathlon, what types of events, what distances has he done? How many races has he done?

Nil Nikic: Yeah, so a couple of years ago we started with a, what they call a mini sprint, right? It was started with like a couple hundred yard swim, I think three or four mile bike and a bottom one mile run.

And then we graduated to a sprint triathlon, which is a collectively up to 13 miles. And we did that, um, you know, over the last couple of years. And then, um, back in January of this year, he graduated to a Olympic triathlon, which is 32 or 33 miles in total. So that was January of this year. And then on may, by may far four or five months later, he graduated to a half iron man, which is 70.3 miles.

David Hirsch: That is an amazing and very high trajectory. Just knowing a little bit about triathlon. Like I have, it sounds like a. Well beyond anybody’s expectations, but if that wasn’t enough, um, I understand that now that he’s got the half iron man under his belt, his next focus, his next milestone is to do a full iron man.

Nil Nikic: Absolutely. So he has signed up for the Florida Ironman on November 7th. Uh, so he has approximately 21 weeks between now and then. Uh, and we have him on a, um, on a plan. Um, and as, as astounding as that sounds, the progression he’s made, when we break it down into plan, we develop for him. Uh, all he’s really done is he’s just improved 1% a day.

The difference between him and everybody else is everybody else takes breaks and they slowed down and they take time off. He just hasn’t taken any time off for the last year. These are 1% away for a year. And now he’s going to improve 1% a day for the next four months, five months. And he’s going to go from 70 to 140 miles.

It’s really, it’s not that hard. Um, when you break it down that way. And so with Chris, you know, he knows that let’s say he did 50 miles or 60 miles riding last week. This week, he’s going to do 65 or 66, no big deal to him because it’s only five more than what he did last week. It’s not like he’s doing 65, he’s just doing five more.

And so in his mind, Everything is just one more. It’s not 140 miles. It’s just one more than one 39. Yeah. And essentially that’s, what’s burned into his brain now. And so every day he wakes up, he’s got his plan. He executes, and his goal is to get 1% better today than he was yesterday.

David Hirsch: Yeah, well, it’s a, an amazing story.

You make it sound so simple and having a little triathlon experience you need to build in some off days, right? You get fatigue. Maybe you get sick, you get cold or flu or something, or. You know, you, you need to build in a little cushion because it’s really hard to stay on a really, really tight schedule because life gets in the way sometimes.

But, uh, I’m, I’m so inspired to hear about, uh, the story, the discipline that goes in behind this. And, uh, thank you again for sharing. I’m looking forward to meeting you. We both have signed up for Ironman. Florida. I’m hoping to be there, that they don’t cancel. And I’ve taken a little bit different challenge.

One of the things that, um, I’ve done as a result of some of these interviews is I met a fellow in Virginia Beach. His name is rooster Rossiter, and, uh, his daughter Ainslie had a rare degenerative disease. And before she passed away at age 12, they had done a hundred, mostly running races. And, uh, they had created this charity in her name called Ainsley’s angels and they basically get able-bodied people.

Like you and I to push people that might not otherwise be able to participate in running races. And I was so inspired by the work that rooster has been doing the last decade that I signed up to do the, um, Napa Valley marathon with one of my daughters a year ago, March and we’ve flown to California and I pushed a 29 year old woman with cerebral palsy from start to finish.

And it was one of the most energizing experiences I’ve ever had was a transformative experience. And after that I said to myself, I don’t know if I ever want to do another marathon, half marathon triathlon. By myself, right? Because it was so much more meaningful to do it with somebody else. I did the same thing in January of this year, down in Louisiana, Louisiana, half marathon, I pushed a nine year old fellow up with what looks like cerebral palsy, but it is something different.

And, uh, I’m, I’m hoping to be able to do the same when we get to Ironman, um, Florida, which is to. Swim with bike, with, and run with somebody who wouldn’t otherwise be able to participate. So we’ll each be taking on a challenge that, you know, we’re not totally prepared for. And I’m going to try to incorporate your 1% philosophy into my training going forward.

So again, thanks for sharing that, Nick.

Nil Nikic: Well, uh, Chris, wouldn’t be able to do what he’s doing if he didn’t have someone like you actually helping him. So he has his partner unified partner. Who’s doing it with them. And who is helping Chris, right he’s side by side with Chris to encourage him. And so keep them on track and to, to help him if he needs any help along the way.

But someone like Chris, isn’t going to be able to go swim in the ocean for 2.4 miles on, on their own, without somebody watching them. So he’s, he’s going to have someone next to him with a tether to make sure, you know, he can’t get too far away from him. And then the rest of the race is just having someone by his side.

Uh, and so, uh, Dan green, who is really, um, stepped in and taken a big role in helping Chris do this is kind of a little bit like you, he he’s done seven or eight iron mans and, you know, he’s told us one of his greatest joys now is helping Chris do what he’s doing. And when he’s done that, then he’s going to be done.

But, um, he’s kind of saying the same thing you are, it’s his joy now comes from helping someone else accomplish something that they couldn’t do on their own. And we need more people like that. A lot of other kids like Chris, who could use someone like that.

David Hirsch: Yeah. Well, my hats off to Dan now, would you describe Dan as the coach or is there somebody else that’s actually coaching

Nil Nikic: Dan is unified partner.

So he does the racism and some of the training with him. Chris has another unified partner, Simone, who actually started doing the sprints with him. Until Chris got too fast for her and she couldn’t keep up with them. Then we graduated to dance, but she still trains with him. He just absolutely loves her and she makes everything fun.

Uh, but as coaches, Hector, Hector Torres, he’s a level three. What they call level three Ironman coach. He coaches top level professionals. He’s got a swim coach who teaches them swim lessons. And then he’s got a stretch coach at the gym who has stepped in to teach them how to stretch. And so people have kind of come out of everywhere to volunteer and help Chris.

And it’s been a wonderful community that has created a welcoming environment and one of inclusion. Where now Chris feels like he’s part of something where before the last couple of years she hasn’t been

David Hirsch: that’s amazing. Yeah. Well, I think of these people as the angels that show up in people’s lives. So my hats off to Simone and Hector and Dan for being a part of what I’ll call team, Chris,

Nil Nikic: I believe that when God puts a big dream in someone’s heart, he also sends angels to help them.

David Hirsch: Yeah, we’re on the same page. Um, I think I saw a video. Oh, Chris was in and there was a iron man tee-shirt it says down syndrome, iron man t-shirt and uh, I think the phrase on the back of the tee shirt was something along the lines of let me win, but if I can not win, let me be brave in the attempt. I was really moved by that

Nil Nikic: that’s the, a special Olympics know that’s their model.

So he got that from special Olympics. So

David Hirsch: we’ve talked about Chris’s experience leading up to the. Uh, iron man, uh, here in November. And I know that Chris has been doing some other things, and I’m wondering if you can speak to the public speaking that he has been doing, and what’s his message.

Nil Nikic: Sure. So the dream was to be like, everybody else be independent.

You know, I asked Chris, what do you want? What’s your dream? And he literally sat down and wrote down. He said, I want my own car and my own house. I want my own wife. And he was very specific. He said, I want a smoking hot blonde wife from Minnesota. Like my dad, doc,

he essentially the same life that I have. Right. So he looks around, he says, I want two kids, a daughter and a son. I want a house. Like you, I want a car like yours. And I want a wife like yours. And um, so in order to accomplish that, we needed to figure out a way to, uh, help him earn his way. Right. He had to do something.

And so when we first started, we only see started the triathlon as a way to get them involved in exercise. It wasn’t until about a year into it. As we started working on this 1% concept that I realized there was something else possible here. So I had this epiphany and in terms of what was really going on, and I was learning as Chris went along and what we learned was this 1% concept.

Uh, and how well it works because it’s simple enough for Chris to understand it’s simple enough for him to do it. And it’s simple enough for him to explain it. Then I had this thought, well, huh, this is what I teach in a corporate world. Why not have him be the example of what 1% looks like? Right.

Everybody talks about a strategy for success. And so I looked at Chris and said, look, he could be someone who could actually be a spokesperson for the. How you can achieve any dream that you have, if you’re willing to work hard enough, if you just focus on getting 1% better each day. So, um, I had a client where I was rolling out the 1% better.

It was actually a company called, uh, Houghton Mifflin out of the Chicago publisher during the vacation business. So I was doing the training for their whole sales organization, about a thousand people in Orlando. And I said to the executives, I said, Hey, would you do me a favor? And I said, well, I said, look, and I showed them what Chris did.

Um, in terms of a triathlon and the 1% and how it works. I said, would you give him five minutes on stage to explain this concept? And that’s how it started. So it took three or four weeks. Once they agreed to do it for me to write up a five or six minute speech for Chris. And then we applied the 1% concept and him learning his speech.

And so he said, look, you’re gonna learn one sentence today. You know, One sentence tomorrow and a month from now, you’re going to be able to deliver a five or six minutes speech. So we now applied the 1% concept from his exercise. So his speaking and all low and behold, he just started learning. And then he delivered that six minutes speech.

I don’t know if you’ve had a chance to see it, but it was a standing ovation. It was just, it was something to behold. It was an amazing speech. And then, um, we just kept that, just kept expanding that. So he got invited to speak to other places and now he can deliver a 20 minute speech from memory. Uh, and the speech is essentially on this concept of, um, how do, how can you achieve your full God given potential simply by willing to get 1% better each day and staying on task until you achieve it.

And that’s what his speech is about.

David Hirsch: Like you said, it’s a simple concept to understand. It’s simple to explain. And I think that the differences, like a lot of things that are simple, it’s just in that, in the execution of it right now, if you understand something, now you have to apply yourself and execute that strategy.

So I’m, I’m so inspired by this. I’m hoping our listeners, other parents, moms and dads will be able to get the message, not when they’re. Son or daughter is 18, but maybe at 12 or 10 or eight or six, or maybe, you know, earlier so that they can start to plant these seeds and that their experience will be even better than your experience has been just as a result of, um, intervening at an earlier point in time.

Yep.

Nil Nikic: So, so the biggest thing I learned, right? The, the, the real epiphany that, that hit me, I can’t even pronounce the word, but, um, what I finally learned, uh, through watching Chris in this experience is that we had a, a lack of understanding of how someone with down syndrome develops. We, we kept comparing Chris to atypical child.

Um, and when I realized that his learning curve was the exact opposite of a typical child, now I understood why we kept failing. Cause we kept trying to fit him into the typical curve when he really needed to follow a different curve. But the curve ends up in the same place. But what it does is it confuses everybody because the perception is that the curve is on.

We’ll never get him to the place where he wants to go. And so we as parents keep trying to put our kids with down syndrome on the same curve as a typical child, and we get frustrated and we fail a typical development curve just to get, you know, compare a triathlon for instance, right. If you put a two 18 year olds, um, on, on a path who neither of could, could do very much, right.

In terms of a triathlon. And if you started training them to do a triathlon or iron man, a typical day child, their curve goes up really fast, right? So their, their curve goes up and then it begins to flatten up because you start to hit your potential. And over a three to six to 12 month period, a typical child will hit their peak curve pretty quickly.

The problem with someone with down syndrome is their curve is long and flat for about a year. And when most people look at that their interpretation is that he’ll never get to the end result. Well, what’s happening is during that year, they’re building a foundation one that actually then within a year, turns into like a hockey puck curve and it gets them almost to the same place.

So in two years, Chris got to a half Ironman as what a typical child with down syndrome. That typical child without down syndrome might do the half iron man and say six hours, but Chris needed eight and a half hours, but the end result is they both got it done. They just took a different path. When I learned that now I understood why everybody was failing, cause everybody was approaching it the wrong way.

So I had to educate all his coaches and everybody around him to think differently. And to let Chris, uh, develop using a different curve than everybody else. And I assured them that if he followed the curve, I was having him on. He would get to the same place. Now nobody believed me because their world never saw anything like that.

Everybody, the curve, everybody understood is the one that we see all the time. That was the greatest lesson learned, um, in this entire journey. And so I believe now I can teach any parent with a child with down syndrome. If they’re willing to follow a 1% plan. To understand that their curve is about a year or two longer than the typical child, but once they get on that curve and starts to build momentum, the results will be astounding.

And that’s why iron man is so important. And why public speaking is so important because it’s two examples where someone with down syndrome is going to be able to do something that they never had any business even attempting, but they’re going to, he’s going to be able to do both of those at a pretty high level, following a different curve from a typical child.

David Hirsch: Yeah, very powerful. Again, thank you for sharing. You make it sound so simple, but I think that, uh, the, the realization is that if you kept doing the same thing and expect different results, that’s the basic definition of insanity. So you need to take a different approach. And that’s what I heard you saying is that the 1% approach is a much longer right.

Drawn out approach. Right. Which doesn’t seem common that, you know, if you’ve got the attributes that somebody with down syndrome does with low muscle tone balance issues, you know, you have to take a longer term approach to this. So, um, I’m hoping that, uh, this message about the 1% approach is one that sticks.

And that Chris is just going to be one of many individuals who is proof in the pudding that, uh, This is their reality, right? And we’re going to break down these paradigms that people have been operating within for decades or perhaps generations now.

Nil Nikic: And here we have an excerpt from an interview that Chris did with the voice of iron man, Mike Riley, you have a big white board in your bedroom. And there’s so much riding on it. Do you write on the white board every day? Yeah, I wrote down what I do so I can see them walking along during the war.

David Hirsch: So I’m wondering under the banner of advice and you’ve certainly shared some advice already, if there’s anything else that you’d like to say as it relates to raising a child with different challenges or whether that be physical or intellectual.

Nil Nikic: Sure. Um, one of the biggest lessons I learned as I started to realize what was possible is, um, I realized, you know, I’ve got two children, one is 30 and Chris is 20.

I realized that I, for the first, um, 18 years of Chris’s life, I treated Chris differently than I treated Jackie. Um, and so I ended up the result was different and one day, um, over the last year or so it, it hit me that. Um, I asked myself if Chris was born a typical child, what would his life be like? And I started thinking, well, you probably about six foot eight or nine.

He’d probably be playing college. I would have gym in the morning training hard. I, and all of a sudden I started thinking about that. So then if that’s what I would’ve done with him, maybe if he didn’t have down syndrome, then why am I not treating him the way, the same way having down syndrome, the way I treated my daughter.

And I helped my daughter, you know, become a successful basketball player in college and all that, but I treated her differently. I treated her as gifted and I treated him as special. And what that meant was we, we protected him more and did more for him, which actually enabled him to become less. Right. So we were the cause of his.

Lack of growth, right? We weren’t helping, we were hurting him. And, uh, one day I said, we’re going to change it. And I started telling everybody around him, I need you to stop treating my son. Like he’s got special needs. I need you to treat him like he’s special. Like he’s gifted. And lo and behold, look what he’s done in the last six months, he’s become a, you know, somewhat of a global celebrity and he’s accomplished things.

Nobody ever thought were possible. He’s got speaking engagements, you know, coming from different places, different people are sponsoring him. I mean, it’s amazing what he’s accomplished once we actually started to believe that he was gifted and we let him pursue that, that gift they’re inspiring.

David Hirsch: I’m sort of curious to know why is it you’ve agreed to be a mentor father as part of the Special Fathers Network?

Nil Nikic: Well, you know, life goes those quick and I find the greatest joy in life is actually doing something that makes a difference. Um, for someone else, um, I’ve seen it with Chris and I see it on the flip side. I see kids everywhere, uh, who don’t have that guidance. Um, and so they end up living a life of either isolation or less than their potential.

Uh, and then struggling while the difficulties, if we can either through our example or, or through some kind of program or something, if we can actually just do something to if people, uh, some direction, right. And some hope that they can control their own future and they can, they can achieve, um, so much more than they’ve been told.

And if we can turn someone’s life around, like people have done for me where, you know, like father Sullivan and others throughout my life have stepped in and given me advice and, and kind of guided me that sometimes people just need a little bit of direction, a little bit of hope, a little bit of an example of what’s possible.

And once you Mmm, okay. That flame a little bit and get people thinking about their possibilities, uh, it helps them change their world. Right. I’m never going to do anything to change the world. But if I can help my son to become the best he can be, maybe he can make a difference in someone else’s life and then maybe Donald cascade, you know, around the world and make a difference for a lot of other people.

So from my perspective, it’s, um, you know, as I get older, you know, how can we, um, do something to, to leave the world a little bit better? And when we got here, then make the difference for someone who may be able to transfer it on because you know, in this new world, You know, my son’s going to be living here for the next 40 or 50 or 60 years.

And I want him to be in a place where he’s making a difference and, and he’s included, um, and others, you know, he can benefit from others and vice versa.

David Hirsch: That’s fabulous. Thank you for being the inspiration that you are. If somebody wants to learn more about Chris, his speaking, follow his triathlon journey, or just to contact you, what’s the best way to go do that.

Nil Nikic: So we created a website for Chris as a place for people to follow him and learn. And we’re going to, we’re going to create more and more as an educational place. So we’re gonna start adding more content there for parents with special needs and others who want to learn more and we’re going to be creating more and more content for them, uh, which we’re going to put on our site and make available to everybody.

And then they can always contact us through the site. Um, we’re just getting started. This is all fairly new, you know, Chris only did that. Olympic iron man in January. And it’s only June now. So this is all very new to us. It’s moving really, really fast. And, and, uh, we’re, we’re trying to figure out how to create a platform that can benefit other people.

And so we’re starting with our website and his website is in his name, Chrisnickic.com. Okay.

David Hirsch: We’ll make sure to include that in the show notes, so that it’ll be easy for everybody to.

Nil Nikic: Um, to see that from there, they can go to his social media sites, right from the website.

David Hirsch: Excellent. Nick, thank you for taking the time and many insights.

As a reminder, Nick has just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or seeking the advice from a mentor father with a similar situation to your own, please go to 21scenturydads.org.

Thank you for listening to the latest episode of the Special Fathers Network, dad to dad podcast. I hope you enjoyed the conversation as much as I did. As you probably know. The 21st Century Dads Foundation has a 501 c3 organization, which means we need your help to keep our content free. To all concerned, please consider making a tax deductible donation.

I would really appreciate your support. Please also post a review on iTunes, share the podcast with family and friends and subscribe. So you’ll get a reminder when each new episode is produced. Nick, thanks again.

Nil Nikic: Thank you. Have a great day.

Tom Couch: And thank you for listening to the dad to dad podcast presented by the Special Fathers Network.

The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process. New fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers, go to 21stcenturydads.org. That’s 21stcenturydads.org.

David Hirsch: And if you’re a dad looking for help or we’d like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad. Also, please be sure to register for the Special Fathers Network biweekly zoom calls held on the first and third Tuesdays of every month.

Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@21stcenturydads.org.

Tom Couch: If you enjoyed this podcast, please be sure to like us on Facebook and subscribe on iTunes or wherever you listen. The dad to dad podcast is produced by Couch udio for the Special Fathers Network.

Thanks for listening.