042 – Paul Koza, a father of triplets, two of whom are autistic

Dad to Dad 42 Paul Koza, a father of triplets, two of whom are autistic

Paul Koza: We had triplets and two were disabled and we’ve been married 40 years. So that’s, that’s one of the greatest accomplishments in our lives. You know, there are gifted people in the world that don’t care about the money. They do it for the right reasons. They just do it because they know there’s a need.

Tom Couch: There are special needs teachers. We call them all miracle workers and agents. That’s Paul Koza a retired sales executive. Paul has four boys and two of them were diagnosed with autism. And he’s our guest on this dad, dad podcast. Now here’s our host, a man who spent decades advocating for fathers, 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. Personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation.

It’s a great way for dads to support dads, to find out more, go to 21stcenturydads.org.

David Hirsch: And if your 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 now to David Hirsch’s conversation with special father Paul Koza.

David Hirsch: I’m thrilled to be talking today with my friend, Paul Koza 64 of Libertyville, Illinois, a father of four boys, grandfather of three, and a retired sales exec. Paul, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Paul Koza: I’m really excited to do this, David. Thank you.

David Hirsch: You and your wife Marine have been married for 40 years and other proud parents of four boys, Brian 34 and triplets, Kevin Sean, Dan, who are 31.

Sean was diagnosed with pervasive developmental syndrome and autism and Dan with autism. Let’s start with some background. Where did you grow up? Tell me something about your family.

Paul Koza: Okay, David. I was born in Chicago and, um, we moved to Morton Grove when I was two years old.

David Hirsch: So, how would you describe your relationship with your dad?

Paul Koza: You know, my relationship with my dad was good. He was classic. He was high school educated. He went to Weber high school in the city. I’ve got a beautiful picture of my dad playing football, myself, playing football and my kids. So that’s kind of our generational connection, but, uh, He went to Weber high.

And I think my dad had a great mind and probably could have been an engineer, but I grew up in that in the times. It was the 1930s when he was at high school. And then he entered world war II. And I think the war for many of those guys had an impact. They came back, you know, the fifties was that whole change by dad and mom were married in 48 and by sister 49, I was born in 53 and so on, so forth.

And it was a classic, you know, he came back like all these GIS looking for something. I think he worked his, uh, you know, mainly in factories and as a machinist, but scraped up enough money for them to move out of Chicago and move us to Morton Grove, where my mom lived in that house, a little house on Elm street for 63 years.

So we were all raised basically there.

David Hirsch: Awesome. So your dad was a world war II veteran, I think in a previous conversation, you mentioned he fought in the battle of the bulge and then he spent a fair amount of his career as a machinist at monogram.

Paul Koza: Well, it must have monogram for the bulk of his career.

We had pretty steady through my grade school years at monogram. And then all of a sudden, you know, he was boss in different jobs and that, that made it a little harder.

David Hirsch: From what I remember you telling me in a prion conversation, uh, your dad actually had a stroke at age 64, which is the

Paul Koza: same age as you are.

Now. That’s kind of a scary thing. My dad was there for us, but through those years he would work 55 hours a week. But the weekends were kind of tough because my dad was an alcoholic and I called him that the classical working alcoholic, right. He never drank during the week, but he drank a lot on the weekends to the point where he would.

You know, it’d be pretty inebriated and then just go out on his own to the local Tavern and stuff. And then my mom would have to go get him. There were a few times that that was a challenge, right? And you ended up a couple of times, you ended up, and this was already a jail, but, uh, you know, where my aunt got involved and my uncle had to come and my mom was kind of scared.

And I remember those things as a kid, but for the most part, he was there for us. And, uh, you know, he worked hard. He was always at all of our school functions and things like that. But then it was after college, just after I got out of college, he had a stroke and the first stroke he was debilitated, but he actually rehabbed, I couldn’t even believe this as much as talking to my mom that she would take them up to the VA all the way up in North Chicago for rehab.

And then about a month after that, he had another severe stroke, which totally wiped out his left side. So he was in a wheelchair. And my mom said the story that she was going to take him to a nursing home. And he said, please don’t. So my mom took care of them for the next nine years. He lived to be 73.

Wow. Yeah. So I look at my mom as the she’s sacrificed everything at that point. And she was just working over at Niles West as a cafeteria lady. And I had to give it all up for my dad. And when my boys were born, you know, they only knew I did. And the wheelchair, like Kevin said, he really share that with me, that.

I was always afraid of grandpa, not because he did anything wrong, but you know, you got a guy that can’t speak that’s in a wheelchair. That’s kind of a scary thing for a little kid. Once they start to recognize, you know, their grandparents.

David Hirsch: Well, what a testimony it is to your mom to be there for your dad and what a great role model

Paul Koza: you want to think those are, that’s you, you mentioned that.

I think that’s, what’s in us, uh, kind of our whole family. And I, we take it from my mom that, you know, you’re there to the. And she’s still compliant at 95, but she’s going to be there.

David Hirsch: That’s wild. So is there any advice you received or an important lesson or two you can take away from your experience

Paul Koza: with your dad?

Well, I respected my dad because he tried to do the right thing. I think there were some demons there, maybe some frustration that, you know, not being able to accomplish what he probably wanted to do in his life. I think he had some natural demons. I think he ran with some crazy guys. He loves sports. He got us involved in sports.

He supported us. He came from kind of that older school, you know, tough guys in the neighborhood kind of thing. I think the world war II experience, you know, that’s what he would gravitate back to the American Legion hall, the moose lodge and sit with old war buddies. You’ve never talked to us about it.

And you know, this PTSD that we all hear about. I think those guys definitely experienced it when I had his discharge papers and I got the flag when he passed, he was a marksman and a sharpshooter with a bar and an M one rifle. So what that tells me, and he had a slew of metals that over the years that you know, his kids, when we were run around play army, we’d always pin on his metals.

And those metals ended up, you know, somewhere, they were never really restored or kind of okay. And. But I just think he was in the fray. You know, you can’t back up the battle of the balls. You can’t be in the Aleutian islands, fight, you know, fight there without, you know, seeing the action. So those are the things that kind of shaped those guys.

David Hirsch: Yeah. Well, I suspect that a PTSD, which is pretty widely known today, and there are things that can be done to help a trust that a lot of those guys experienced the same thing, but it was undiagnosed and they were just left on their own. Right. Some of them. Self-medicated whether it was through drugs or alcohol or other things.

And, uh, you know, we’re all human beings and, you know, we’re pretty frail characters and of the fact that he could keep it together as long as he did. And like you said, he was there.

Paul Koza: He was there for us. And I laugh because he went to Catholic schools and I think my dad was lefty, but I think because of the nuns made a right with his right hand, And they, they couldn’t afford a lefthanded glove.

He learned to be ambidextrous. So when we would play catch in the yard, he would take my sister’s glove, put it on his, on his right hand. And he would throw in his left hand. And I was always like looking at it funny, you know? But, uh, that was one of the things that, you know, you just think of the generation things that they were asked to do.

And, uh, and my mom, she was only eight grade education. She would always revise. She still reminds us of that. Give us kind of funny, but. Seamstress, incredible talent. I see things now that she could do, she was making gowns and dresses and work for this. Uh, she said, I think it was a little Jewish tailor who had their own shop in the city and she became part of that or hits.

They got our sewing parachutes. I mean, it’s just amazing that she came back and did that, but then got married right out of that. And then she was raised in a family. Right. And really didn’t go back to work until we were all. Pretty much out of high school with bags, the cafeteria, it’s just a whole different, you know, set of kind of rules back then, you know,

David Hirsch: did anyone else, uh, serve as a father figure while you were growing up?

Paul Koza: Um, Oh yeah. I had some great coaches when I was in middle or about seventh grade. It was, you want to keep playing the trumpet or do you want to go sign up for flag football? And, uh, at that point I just signed up for flag football. Well, then we had this gentleman. Miss Jack Armitage and Jack was the local insurance guy, but he was the football coach for st.

Martha’s flag football team. And it was a championship team. He had a little good legacy. So he was a role model for us, just a great guy, big personality. Anytime bear fan, but the bears at the time started sliding. So suddenly we’re running packer place to this day. I still have a problem Greenbrae flood.

Right. I can remember it. And Jack was just a great guy and just took all these guys in all eighth grade kids, seventh grade guys. It just gave us a great role model because Jack, unlike most of our dads who, you know, what we’re working, you know, maintenance or this kind of thing, Jack had, you know, who’s insurance guy.

So it was a little higher level. So it was kind of something to shoot for that Jack’s got this and he eventually moved to Northbrook to a house. We were like slave labor working in his yard, but he buys pizza and that was great. But Jack was just a great guy, gave us great examples and I’ll never forget our little banquet.

In eighth grade, he took, took my mom and dad aside and said, your son’s going to be a leader to this day. I remember that. You know that, uh, Jackson, I was going to be a leader, I think going to high school, I was captain of the football team and stuff. We could talk about that college and things. You know, you just become a leader.

I became, uh, a sales leader and uh, I enjoyed leading people.

David Hirsch: So that seed got planted at a very early,

Paul Koza: early age. It was a competence seat in my life. You know, that’s what I think of someone sees that in you and believes that, and you believe it yourself.

David Hirsch: Yeah, that’s fabulous. Thank you for sharing. So, as I remember, you played football at Notre Dame high school, and you were recruited to go to Brown university where you received a degree in anthropology,

Paul Koza: anthropology degree.

Yeah.

David Hirsch: So when you were coming out of college, what were you thinking? What,

Paul Koza: what was on your mind or you think it in the seventies skewed music and stuff? I think what happened to be was like gives you these crazy things, right? So I met Brown. The Brown university had just built a new, not Torian and the NCAA swimming was going to be there.

And lo and behold, one of my old high school coaches who was a swim coach and also offensive coordinator was out with his buddy and knew I was at Brown, gave me a call and want to know whether there’s some taverns with good food. They’d go to, I gave him the name of a couple of good places. And he said, what are you doing next year?

I said, well, I’m probably going to stay here. I got a BA in anthropology. And I’m thinking about being a grad football assistant. I wasn’t sure it would be a grad student maybe going to coaching. And he said, well, you know, I’m going to be the head coach of a football team. Can you teach anything? I said, I think I could probably teach earth science.

And I thought, maybe that’s what I would do. So he said, well, I can get you a job. He said, I’d like you to coach the sophomore team. I said, that’d be great. So I ended up getting the job offer to go back to my old high school. But welcome back, mr. Cotter thing to be the earth science teacher. And football coach and, you know, my buddies are like, what if you go back to Chicago?

Yeah, I really enjoyed that. I did. And I really enjoyed coaching, you know, and then I met my wife at the same time, so, uh, we had a lot of fun.

David Hirsch: Yeah. So I was sort of curious to know, how did you meet Moraine?

Paul Koza: Okay. So I just told you the story about coming back. So my buddy, Danny McCarthy was getting married at the end of the summer and I’ve come back for the wedding and it was kind of the time to get it all back.

Right. He was getting married in August. I had to come back to teach. I had to kind of exit the Cape Cod Providence scene. And, um, I was in the wedding and my buddy and Maureen had a good friend. That also was in the wedding. Now I had known Maureen through high school a little bit. We crossed paths a few different times and she had just broken up with a guy that was later became the vice president of the Cubs.

So his loss by game. And we just, she just broke up with the guy. I came back with my dog and about 10 bucks and I said, do you want to go out? And we went out and then it was love at first sight. And again, second sight, I guess. Uh, we continued to date and then my buddy was getting married at about two months later, back in New York.

And I asked her to go with me to that wedding from there. We just had a great time. That’s

David Hirsch: fabulous. Well, thank you for sharing. So, um, you were a teacher and a football coach at Notre Dame high school for a number of years, and then you must have transitioned into,

Paul Koza: well, here’s what happened after three years of teaching, make it about 9,500.

I think I got a thousand for football, another 500 for track. My wife was working at the bank where you get a lot of promotions and a lot of titles, which you don’t make any money. She said, didn’t you go to Brown university? Shouldn’t we be doing what you need to be doing something more. And at the time I saw myself, if I was going to advance the teaching, I would have to go almost get the whole degree, you know, certified all that was going to cost me as much money as I’m making.

So I said, okay, it’s time for a career change. I had speaking ability because I was engaging new students all the time. I had to speak to parents, I could connect. So I thought, okay, I’ll get into sales. I first tried it. My buddy, Roy Robins said, I’ll never forget. Roy was working for the ethyl corporation.

So they had an open and I met this guy. He ran the gas clave from South Carolina and he needed a rep. So I became a rep for Ethel and I worked for them for almost three years. So from there, I had connected though with a good buddy at the other corporation, Danny Griffin and Danny introduced me to Sam Shakespeare and Sam interviewed me up to Deerfield and he said, you know, I like your abilities.

I’m going to refer you to rival Wagner at Baxter. And about a month later, I had interviewed with Chicago and I got the Chicago territory. So I worked for Baxter for eight and a half years. And, uh, it was kinda fun, but Ethel was great. And I had Brian and 80, 84, I was joined ethyl or I joined Baxter in 81.

I had the triplets in 87 and you know, you’re in the field and you’re doing well, but you want to advance your career. So at that point I had a friend of mine who had left and said, Hey, there’s a new company starting out it’s biotechnology. So I interviewed. And the guys said, yeah, you’re good. But so I thought, man, so I kept the hammer and the guy and for about eight months I kept hammering and finally they had an opening and he hired me.

So I left Baxter guys were great. We left on good terms. And here I got this job selling. Epogen. But I learned a lot. We launched this drug, we became the world’s largest biotechnology company. If you had Amgen stock, it would, you know, as a valuable, it’s a great company. And in fact that at that point, when I left with two year old boys, I remember this guy said, we’re going to give you some stock options.

And you know, if the company does well, you’ll make 50 grand. And, uh, you know, and you could always go find another job. Well, those stock options that changed my life really. The bottom line though, is I joined this company that was all about family. And instead of incentive trips, like you win, you know, an individual trip.

They said we’re tired of that. So if you meet your goal, we’re going to bring your entire family to California for a sales meeting. Well, everybody thought, yeah. Yeah. Who wants to go? Well, it turned out to be an incredible experience. My wife and I. In August of every year for nine straight years, what it did for us is you’ve got to understand that now I’ve got four kids.

And at that time we knew the boys were autistic because now at two, we started to see the change and I’ll never forget. I was a DM driver with the rep and my wife had gone to the final meeting where they were diagnosed with autism and she was out in the driveway crying and said, okay, well, here we go.

Now I’ll give it a go. So we would get these sales things. And what would we would, I said the morning, here’s what we’re going to do. We have a family vacation. We rented a cottage up in, uh, you know, up in Eagle river, or we rented a place in Colorado and we’ll bring your parents. So our parents came with us to Colorado.

We went to Wisconsin by ourselves that we do that in June. And we’d have this big family vacation. The boys in pontoon, everybody have fun. We chase and Dan and Sean all the time, but we would make it work. And then in August we would just bring Brian and Kevin. And Maureen and I, because now, because folks were remarkable, they were willing to watch the two guys for, like I said, they’re miracle workers for two weeks or for I’m sorry, for five days, Brian and Kevin would have their time, because remember with, with disabled at that time, they were always in the frame, always in the frame, everybody had to do things alike in a lot of ways, and they were prayed with it.

They understood that, you know, the brothers were disabled, but gosh, it was crazy. And then they would have, they could be themselves, they could be kids again. And we would have a little downside too. So they would get tickets to Disney or, uh, Knott’s Berry farm or universal studios. And they would go and they would come back and we would finish our meetings and we’d all meet and have a family thing on the beach.

Spectacular. You know, companies can’t do that anymore and she doesn’t do it anymore. But for a nine year period, it was a remarkable thing. And a nine year period where my boys needed it, where we needed it. It gave us, you know, the respite piece, you know? So I looked down at the good Lord and he says, yeah, you know, this is what it is we’re to, so you don’t want to blow that opportunity.

So I worked really hard as a manager there.

David Hirsch: That’s awesome. Thank you for sharing. So let’s, uh, talk about special needs on a personal level, and then beyond what was your connection to the special needs community before. Your boys were diagnosed. Did you or Marina have any experience?

Paul Koza: We had no experience.

You know, we obviously knew about downs children because of their, you know, you’d see them visually and, you know, we would connect, we had no understanding of autism, nothing. Okay. In fact, when the boys were diagnosed with autism, the incident rate was one in 10,000. There was a thing that. It said, I may have shared this with you in our earlier discussion that if you have multiples, the divorce rate is 50%.

If you have disabled, your divorce rate is 50%, one or two couples. We had triplets and then two were disabled and we’ve been married 40 years. So that’s, that’s one of the greatest accomplishments in our lives, but we had no knowledge of it. So we find out. From our pediatrician at first, at about a year with the diagnosis, you know, they say at 18 months at manifested, we did see it.

Sean started grouping things. Dan was just, just so anxious. We’ve just started to see them deviate. And we had, you know, you have a baseline, you got Kevin who is not autistic. And Brian who had add was a little high wired, but you know, very verbal and could do a lot of things. So. We could see the differences in the guys.

So what do you do? Well, we talked to our pediatrician. We had this wonderful pediatrician when the boys were born, we had dr. Campbell and Baxter changed insurance, and we had to go to an HMO and we ended up with dr. Brown who was at, um, out of a good shepherd and Barrington. And we kept dr. Brown probably for their whole, all the way into high school.

She was phenomenal.

David Hirsch: Coincidentally, she was our kids’ pediatrician.

Paul Koza: I loved her husband, dr. Bregman was in the nephrologist who I had as a customer. So what would that with the Amgen? So that was a wild thing. So she also helped us steered us in a lot of ways to what we need to be looking at. So we had dr.

Brown and then we were in Lake County. So we found out that CDL, special education of Lake County. It was a pediatric assessment center. It just opened up. And we brought them over at age three and they were totally diagnosed. And I remember they sent us to children’s and they did some analysis. They’re more of the technical analysis.

That’s what we found out about pervasive developmental, but we also met a psychologist or no, I’m a neurologist who said, you know, here’s where we’re at with autism, but there’s a new psychiatrist moving in from the NIH dr. McKenna. She’s taking patients. You might want to talk to her. So at age four, we hooked up with dr.

McKenna. She would see us once a month for the next 18 years. Wow. Even though they were not even pediatric anymore after they were like 19 and 20 and she also gave us kind of the bonus ride of talking about Brian and Kevin, because she’d said, Hey, you got to look at the family unit. We had a few psychiatrists before dr.

McKenna though on the side that were just, they were trying to write them better with different psychotics antipsychotics. And I remember we just, it was a mess and dr. McKenna said, we’re going to strip them down. So maybe my nose, my ears aren’t there. It gets a little blurry. It was exactly what we had.

Or we have a guy that USC for about a year and he was just writing every script possible. Danny was screaming and child was a mess. And we were like, wow, this is not working. And she just stripped them down to baseline, said, let’s see who they are as people. And then we found out that this one medication Risperidone just calmed them down and they could sleep because I don’t know, I hate to say this, but you know, Sean was a runner.

So Sean, if we left him in a bedroom, He would leave at night. So we reversed the locks now from a fire perspective, not the smartest thing, we’ll reverse the lock. So he would be locked in his room and he would eventually calm down and go to bed. But if you didn’t, you know, if you went to bed, he would be gone classic story shy.

And he was a runner all the way. When we were a vet, when the boys were seven, I had a spring break. So I said, where are we going to go? They were about nine. And they were, Steve was still running. We would decide we’re going to go do a staycation, go downtown to the NBC suites and go at that time. I think it was ESPN South.

So we check in, we get up to the 14th floor and I remember we all checked in, had one, those big embassy suites. We put the couch by the door, double lock the door. The boys were watching a movie in one room and showers in the other room with me. And then I got up for some reason. And next thing, you know, Charlotte was gone.

So I’m now, if you know the embassy suites, you’ve got those high balconies, you don’t know what’s going to happen and we’re running around, we’re calling and we’re looking down 14 floors and we hear little boy, little boy. So when we had checked in, Sean was a big swimmer. He was trying to get into the pool, the penny pool, you know, the fountain and the, I remember the guy at the front desk is like little boy, little boy.

We we’re like, should we take the elevator? So this is a guy with autism that can’t speak. And he made managed to get out of our room, push the elevator, push it to the first floor, get out on the first floor. He had a swimsuit out. He was going swimming. Cause we had told them we were going swimming. So these are the little things that happened.

You know,

David Hirsch: you can look back and maybe laugh, but now at the time you were like,

Paul Koza: Oh my gosh, it’s horrific.

David Hirsch: So it sounds like dr. McKenna played a very key role on angel, if you will. And was there any other advice that you can remember whether it was from dr. McKenna or somebody else that was like a turning point or was a light bulb coming on for you and Maureen?

Paul Koza: I think those were, Oh, well, you know, You have to look at, so we had the clinical side, but we also had the classic, you know, what are we going to do with these guys? So I’ll never forget, you know, you say you have two autistic kids, they’re going to be in the same programs, but Dan and Sean really couldn’t be in the same program.

And we also had Brian, so Brian had add, and we had kind of connected with some teachers with Brian through the special needs. There was, you know, cause he was actually in a special needs. Um, No learning thing at that the high school and the grade school. So we kind of had made some connections with him and they had told us, okay, now you’re going to go to see doll.

And there are certain teachers that are awesome. So the guys got involved in different classes. It was a guy, his name was David. I can’t remember. He was great for Danny. He was phenomenal and Maureen would know his last name, but David had Danny for about eight years and he actually. You’ve seen some experience by Danny.

You could get a little loud or anxious and he calmed him down. He was a guy that could control Danny. Sean. His personality is kind of flipped. Dan had moments of clarity when he was like nine and 10 and we actually took him out on one of our Amgen trips. But then when hormones kicked in at puberty, it just changed and completely, and he got over anxious and that Sean went the other way.

Sean was kind of a runner wasn’t much of a listener. And then he kind of calmed down. As he’s gotten older, there are special needs teachers. We call them all miracle workers and agents. We’ve had several incredible people. And of the special rec people. They would also, several of them became respite workers for us.

And we’ve just had some really wonderful people to allow us to at least go have dinner once in a while. And you gotta remember, I was traveling, you know, as a regional sales director, they expect us to be in the field a little bit. You know, I’m trying to grow my career. So the only way to grow your careers to sell, you’ve got to sell yourself.

You gotta be giving input. You gotta be driving meetings, you gotta be doing those things. So when I would be gone, Maureen would be on her own. So these respite people would help. It was fantastic. You know, there are gifted people in the world that don’t care about the money. They do it for the right reasons.

They just do it because they know there’s a need. It’s like the nursing profession and you know, all these things and the reasons that you’re doing this now, it’s just the people reach out and know that this is the right thing to do.

David Hirsch: Yeah. Well, it sounds like they played an instrumental role in your lives and Maureen’s life and the boys development for that matter.

And I’m wondering what impact has Dan and Sean situation had on his brothers as well as the rest of you?

Paul Koza: Oh, I saw my sons at an early age. Learn how to deal with. The simple chaos of an every day, Maureen was so afraid. First of all, just having triplets. She was afraid of what we do with my older son. And then once we’re, they’re diagnosed with autism, what’s it going to do to their social lives?

We don’t want them to leave us. We didn’t want them to, we want them to have normalized, go visit friends. We wanted them to not be afraid to bring their friends to the house and what it did. It did both. It allowed them to learn how to deal with them. For others with disabilities and how to bring kids who didn’t have any touch base with disabled into our house.

And to this day, Brian’s friends are, they know Dan and Sean Kevin’s friends know Dan and Sean, our neighbors are very comfortable, but we never stopped trying to do stuff. We never stopped trying. We would always go to family outings. We try to go out to dinner. We go to the movies. We learned that if we went to the movies and sat in the front row and the boys were yelling and screaming, it didn’t affect the movie.

If you went the last road effect all the people in front of you. So we saw beauty and the beast and all those Berry Poppins very

David Hirsch: close.

Paul Koza: And it was just the adjustments like that. Um, some of our greatest trips though, I mean, we went, you know, we went to Colorado several times and we went up North several times and, uh, You know, they’d always kind of be on the lookout for their brothers, but we don’t want to have to make them their keeper.

And, uh, you know, I wish they were here right now. Cause they could share a story or two with you, but, uh, they were great. They were great. I mean, we have a video of being an Eagle river and I don’t know what I was thinking, but my son, Kevin is four and a half and he’s driving the pontoon boat. Brian’s next to him.

And Dan has Sean, Maureen and I are sitting in the back. Oh my God. I mean, you know, Kevin watch out for that. Boats, you know, so it, you know, you just, we tried to do things that were normal, that were never at all our friends would always say, Oh my gosh, I don’t know how you do it. You know, I don’t know how you do it.

And you know, you never think about it consciously. You just do it. I bought two bike trailers, so we could put Dan and Sean and want it. And Brian and County other more. And I would go for long bike rides. We had the triple stroller when they were young. Brian took the longest time to get out of training wheels.

So it was great. He’d be in training wheels with ever dog Bucky. He’d be on the leash in front, we’d have the triple stroller. And that time the technology was, it was great. You’d have them all lined up like a sled and we would go every night. Cause you knew after dinner, you got to go, we’d go to the park and they would all go.

Everybody kind of went together and eventually would Kevin and Brian had their independence, you know, They would go off with the friends. We said, Kevin met Billy at age nine. Didn’t come back to 18. That was our other neighbor. But those that family, the SACS Elise and Kevin, you know, we’d good friends with them.

They’ve been intertwined with our lives. You know, we, we felt like when we moved into our neighborhood in Libertyville, we were blessed again. We had some wonderful neighbors who become our closest friends. We call ourselves the Kozel piece, actually. Because of them. We were able to do normal things. We rented houses for 10 years on the outer banks shape.

They’d be chasing the kids, just like we would bill. I would rent two tandem bikes every year for 10 years. And bill would drive Danny and I would drive shop and we’d go on 10 mile bike rides. And to this day, when we go to Florida, we’d like to go to Florida and Danny and I still ride 10 miles a day. You know, Danny could stay on the road.

He won’t. Crashing anything. I got to yell to him. He’s quick. Sean had never mastered, um, he could ride a bike. He’s got great balance, but could never master riding bikes by himself. So we had, you mentioned tandems earlier and it was private discussion and we had a tandem bike. I still got it hanging. It’s big.

Now you’re talking about, you know, four or 500 pounds on the tandem, so we’re going downhill. Good brakes shot on there.

David Hirsch: Well, thanks for sharing. So I’m wondering about some of the supporting organizations. If you could just sort of give me a brief fly by, um, I think you mentioned special Olympics, obviously this special recreation of Lake County and then the center for enriched living.

Paul Koza: Yeah. I mean, those are the big three. If you start with, we started out as seed all, so that was special education of Lake County. There were offshoots of that. Then there was special rec of centrally County. They’ve been in those programs since they were five, they had special Olympics that were off of that, but we had buddy baseball.

So I was big into sports. So buddy baseball was a really cool thing in Libertyville was part of the little league and you’d have a disabled, whether it was downs or autism, or just as just a little bit of a disability and you’d have a regular little lever next to him. And, you know, we had to really coach a little, little years, don’t you let them try to catch it, then you throw it.

But it was great. And I ran that for a few years. We would go to doll all winter long on Wednesday night, stayed at this heated pool. So it’d be like going on a mini vacation. You know, we would always go swimming on Wednesday nights. It’d be 40 below out and we’d jump in the van and go. That was a special treat.

All my guys know how to swim. And Sean and Dan competed in special Olympics swimming. Until they were 18. And then Sean continued until he was about 25. And, uh, you would do that little, you know, frog Lake back and forth. We’d go down to Nico Valley and do that. They did the track. Really it’s just been last year was the first year they didn’t do track.

So special Olympics was good. They did snowshoeing special rec of Lake County is an awesome organization and they do everything. They got outings. They go fishing. They’ll go to the zoo though. You know, then they have dances and they have craft nights and food nights. And so they basically go during the week from nine to five to a program.

And then on the weekends they have stuff. The center for enriched living is incredible. So what happened nine years ago? So Danny was 22. He had transitioned as the program from high school, almost like parallel college. It’s still state-funded. And you’re transitioning them to the next level. At that 0.2 things happen.

You have no funding and you have no programs. So you’re on your own and you have to secure other types of funding. There’s home-based funding, which is a state funding and, you know, things like that. And we can talk about that later. So we want to know what to do. We will only during transition the program, directors were also wonderful teachers.

Cindy suggested Dan should go to North point. Sean should go to Riverside. And Riverside is a full ICD facility here. And, uh, they said we don’t want to as a resident, but we’ll let him go to the workshop. And that workshop was for the pretty heavily disabled, but Sean, you know, we’d be good for him, so he could take the pace bus and Dan could take the pace bus.

So we thought, okay, transportation wise, they’re going to now go from instill a little yellow bus, picking them up, which is pretty secured to now this is public transportation. And I’ll never forget. Danny’s first month going up to design, he was getting replaced because he’s loud and met him. So it was a little loud on the bus.

Sean doesn’t really speak so he’s quiet, but they were getting pretty good at taking the pace bus, but Dan was coming home and he was very anxious and very angry and we didn’t know what to do. And you know, hormones were still raging and we found out the economy had gone bad. You’re thinking nine years ago it was terrible Academy.

We were being sent letters. Can you send puzzles? And they put them in a cube for eight hours and asked them to do puzzles and word games. And we were like, we gotta find something else. My office was right across the street right here at Parkway North. And I said to Maureen, I think the center for Jewish living has a program.

It looks like it’s an adult day program. And she said, okay, you know, you go investigate. So I came over and I met the folks here. And they were just wonderful. And we first met gene and gene says, okay, bring them in. We’ll evaluate it. And she evaluated Danny’s yeah, I think, I think he’d fit here. He’s been here for nine years and as you can see, they have a very open policy, but they allow, and they work with them.

So the first few years she said, boy, he’s still anxious. We found out that we bought a rocker. And he sat in the rocker and they would let them go sit in the rocker and he’s got the roam of this place, you know, but he’s just not a great, they they’ve been wonderful for him. And we’ve always had John separately.

What we did was we decided to send Dan here Monday, Wednesday, Friday, and he could do a special rec of Lake County program Tuesday, Thursday for Shawn, we would go, um, Monday, um, I’m sorry, Monday, Wednesday, and special record Lake County. And on Tuesday, Thursday, he would do Riverside and take the pace bus.

So it was quite a complex schedule. You know, we’d have Monday, Wednesday, Friday, I’d be driving here. If I was traveling at the time, Maureen would drive him. So a lot of times I could take them on Monday and pick them up and I could probably take them on Friday and pick them up. But most of the time I’d be traveling.

So Maureen would be driving and then she’d have to make sure the guys are on the bus. So a typical day was. Get up at six, I would go work out and Maureen would get up, make sure have coffee’s made. Then we get them up. We’d make them showers and we’d make their breakfast, like their lunches. Get them on the bus.

I go to work more. We go exercise and then, okay. And I’ll start to get into more, most of the time we’re, I’d have to pick them up, meet the bus. There’ll be always that scrambled to make sure we got coverage. And then, uh, you know, they’re home by three, but. Once the center kicked in and we started having see, and Dan calmed down and Sean was over at, uh, Riverside.

We kind of had good organization and then the special rec stuff, you know, fit in between it. So that was our schedule. It was, you know, it’s been their scheduled for all these years. That’s fabulous. Now we’ve added Shawn. Uh, Riverside would finding Shawn’s development and socialization has actually gotten better.

We thought he’d do better here. So he’s here two days a week. We still don’t have Dan and Sean together here. Because we want to separate those activities. They’re going to live together for the rest of their lives. They got to have some separation.

David Hirsch: Okay. I want to spend a couple of minutes talking about your experience with ponds.

This was a really instrumental thing. And I think that if listeners could only remember one thing from this interview, and you’ve already shared a lot of really insightful things, it’s the advocacy, the vision you have to have for years down the road. So if you can recap what that journey has been

Paul Koza: for the last 13 years when they’re 18.

So they’re 31. Now when they’re 18, you have an opportunity you get with an agency. We did community alternatives. Nan agency will help you, you know, through documented observation and goals and goal setting, you can access state funding. Then most people will sign up for puns and puns is forget what the exact acronym stands for, but it is funding for longterm care in a, either a community based home or an organizationally based home.

But. Because those places are not readily available at 18. A lot of times you go on the list and you get into a lottery and they, because there was a lawsuit, the Lucas lawsuit and the budget only allowed for it. They were only pulling 500 names a year, nor 30,000 people on the list. Okay. So you get on the puns list and you get in the puns lottery and you have to be ready at that point because if they draw your name, you’re going to have to access that funding and have a place for them to go.

So, you know, we were kind of back and forth in it and exactly what should happen with that. But we had our agency and Renee was our agent and she signed them up. So for three years we were on the punch list and nothing happened and they got to be 21. And she said, you know, there’s funding that they could have for you to support their programs.

Now that they’re going to go to these programs, that’s called Homebase funding. And if you look at dollars, just perspective wise, they get about $24,000 from home-based. They’d get about 70,000 if they were living in a community based home. And that is all determined by their disability and what they need.

$24,000 for two guys sounds like a lot of money, but it’s not. You know, it goes very quickly because it’s used for programs and respite, transportation and whatever, but we would apply it. We document, we apply it, we apply it to the tuition here. We apply it to their special rec programs that we obviously fund everything else.

So when they were 18, 1920, they were on the critical list for puns. At 22, they got community. I mean, they got home based funding and we thought they were still on the punch list. But what happens when you get community based funding? Unbeknownst to us, it moved them to something called planning. So here we are thinking that they’re going to get their names drawn and they’re not, and they’re on the critical list and the categories were critical crisis and emergency.

So who’s going to get the money and why we don’t know. Also what we were finding is the state. There are great organizations. Clearbrook Glen Kirk, but they don’t have the capital to buy homes. Maybe they get a home donated. Maybe they could scrape it up, but they were putting four, five, six, seven, eight individuals with pretty heavy disabilities into homes in order to have enough money to cover it.

There were 42 homes with, um, I think with Clearbrook and I think maybe 20 something with Glen Kurt, we looked at the homes and we just, first of all, we didn’t want to separate the boys. And then secondly, there were just no beds of them. And the economy was kind of, it’s been tough if you think about through the time.

So here we are thinking they’re on this list and, um, now it’s, we’re getting older and, and it’s time. It’s time for them to really start looking. And I solicit, we cannot survive with us funding this, the rest of life, our retirement one, who’s going to go, it’s going to cost us, you know, $150,000 a year to pay for the boys.

How are we going to do that? Plus their quality electric would be horrible because they won’t have any money for programs. So we continue to work with our worker and she said, I’ve got you on the critical list, critical list. And I’m sitting here thinking, wow, we’re not getting pulled. And then they had a delay with the budget crisis.

Nothing was being done. So lo and behold, here it is 2018 and autism now. Which is an organization, a supporting organization sent out a memo and it said, if you’re on the pond’s list, uh, this represented Gabriel is going to look at the peninsula. She wants to take 600 names off of it. She wants to restructure it, but she needs support testimonials.

So I got on the illinois.gov. I got all my friends and we had a hundred, four positive testimonials and we’re waiting. We were waiting to see what would happen. And there was nothing. So I looked at the thing and it was supposed to be a review at the Bilandic center and I called up and they said, no, we haven’t heard anything.

And I noticed that going on, ally.gov, that one of our representatives from Libertyville was on the list as on the rules committee. So I called him up and he said, well, I’m only the token Republican. They keep me on the rules committee within 50 miles. But I’m interested in your issue. So I went and he let me come to his office.

I had a meeting, his administrator, tremendous lady said, I think we could do something. He had a connection with the department of health and human services. And then things changed. All of a sudden we got a memo that there was a new director of disabilities, Melissa. Right. She was going to change the policy.

She could have 900 names and she was going to draw 900 more every November. And she was gonna put you on a list of planning and she was gonna have two categories, either need money now, or are you going to be on the planning committee? And I said, wow, this is something, so 900 names be prawn or natural. I think, man, we’ve been on this list for 13 years.

So this woman, Sharon sets up a conference call with Melissa, right? And I go in the office, we were on a call for an hour. And I said to Melissa, Melissa, I don’t even know where we’re at. I have two sons. You look at them as separate. I look at them as one family, first of all. And secondly, we don’t even know where they’re at.

She goes, I know where they’re at. She says they have 54 months on the waiting list. And I said, how could they have 54 months? It doesn’t equate to 13 years. She said, well, before that, they were in planning. I said, we never agreed to planning. And I said, I have data that shows they had three years on critical.

Then according to you, they went on planning. And then they started again. I said, that’s at least 90 bucks. So alumni of staff look at this. And, you know, I didn’t hear anything. And then I did a follow up and she said, yeah, my staff has looked at it and you’re absolutely right. There are people that have gone on and off that list because of their status because of their health, because of the individuals.

But then you shouldn’t be penalized. If you’ve applied for this aid, you should be tenured. If we’re going to go with the tenure process. If you said you will get funding, I haven’t received that letter yet, but I’m assuming I’m going to get it. So in the end, she said also because of that process, other people are going to be on the list and we’re going to try to get as many people off the list and either into planning or get funding every fiscal budget from now.

So I’m excited. So what we’re planning on doing is that we get this letter in November, it’ll be the 2019 July 1st budget. We’ll get funding. I plan to buy a home. I have another individual here at the center for rich living who has funding as well. He’s going to be a roommate. We’ve already kind worked it out with his family and always known him.

So we’re planning on our own little silver home, probably in the Vernon Hills area, hopefully in the next year.

David Hirsch: Well, let’s do a followup interview a couple years down the road and maybe look back

Paul Koza: on the

David Hirsch: salvation, uh, the perseverance that it’s taken and, uh, people that have played an important

Paul Koza: role, the center for rich living, you know, um, It has always kind of been an overview and giving us insight into people, community alternatives.

And we also have another group called Activision’s. That’s going to actually do the staffing and that’s another independent group.

David Hirsch: Okay, wonderful. So I’m wondering, what advice can you share with dads or parents for that matter about helping children with disabilities reach their full potential?

Paul Koza: Well, I think if you, as you listened to my discussion, I think the biggest thing is they can function.

You have to reach down and try to understand it when you’re getting stimming and screaming, then the lack of understanding is not a something that you can ignore, but you have to work through that and you have to be patient. I’m not necessarily a patient guy. My wife has incredible patients, but I also have, I care for people.

I care for my guys. And you just have to be ready to. My wife has always classic take them out of the environment, calm them down and work through it. You don’t want to just, you know, totally deflect it. They have to become comfortable in situations. So you have to always expose them to the situation that might be loading up, putting on coats, getting in the car, going and lo and behold, five minutes there.

You’re heading back. We’ve spent. Quite a bit of money going to the, um, aquarium, the Shedd aquarium, and simply running through it and getting in the car. I mean, there was moments, but the more they’re exposed to it, guess what? The better they get places like the center for rich living, special rec of Lake County.

Uh, see all these places expose them. They help families with that. So you want to work closely with the organizations that are also doing day programs with them and don’t just drop them off. How did they do today? What are they doing? What are some of the challenges? What can I help you with? You got to become involved, you know, and you’re exhausted.

I mean, one of the things that happens is it’s called respite for a reason because you’re, you’re getting away from the daily routine and you do need to get away from that morning. And I used to say, Oh wow, we’re going to go out to the movies. And that sometimes when we drop him off at six 30 on a Friday night, And I have to pick them up at nine o’clock.

We just sit and vege because you know, the calm is good and the discussion together. And other times we get a chance to go out to dinner or something. But my, my recommendation is, you know, you know, no one asks for, but you own it and they’re not going to get better without your help. I just find that you got to persevere, but there’s such, there is world warning moments.

There’s a lot of rewarding moments.

David Hirsch: That’s fabulous. So let’s give a shout out to Harriet levy and our friends at the center for enriched living, uh, for putting us in contact with one another.

Paul Koza: Oh my gosh. Thank you very much. The area. I mean, I hope I, I look forward to the next step. You know, people could hear my story, but I look forward to talking to somebody that’s maybe early in the journey.

Cause I know how important that is and making that connection because I just think if you could talk through it, if you could see around the corner, I do that now with my kids. And you do that with your kids when they’re hitting a, you know, as young parents or in their profession, you know, you’ve been there as much as people think it’s all.

Do you know? We’ve all experienced, same thing. It’s a different date.

David Hirsch: So why did you agree to be a mentor father as part of that Special Fathers Network?

Paul Koza: First of all, I do believe in Harriet, Harriet asked me, but in listening, you know, you, your introduction memo to me, and then having the ability to listen to some of the podcasts that were there and seeing, first of all, marriage similarities of the fantastic fathers.

And it kind of motivates me to say, wow, these guys have challenges just like I do. And they’re doing a lot, even a lot more than I’m doing. So that number one is just the, you know, to see that and to hear it. And then an opportunity, like I said, I’m just excited to help out. Excellent.

David Hirsch: Is there anything else you’d like to say before we wrap up?

Paul Koza: Um, no. I think, you know, as I listened to these, everybody has challenges and you’ve gotten a lot of incredible filers together, dynamic men. And I think the one thing that, that I’m so blessed with right now being a father and a grandfather. Is the fact that we are able to keep our family together and we are, we are able to have normal lives as parents and have the same blessings.

Um, you know, cause what I’ve seen in life, whether you have the healthiest of children, life is not easy sometimes. And even the healthy children run into crisis and you gotta be there as parents. You got to especially be there as dads. Um, One thing I did want to say is that through all of this, I was able to coach my son, Kevin and Brian in youth football.

I was able to coach them in little league. I was able to be part of special Olympics, more as a viewer to my guys going to swim meets track meets, um, do all the normal things that dads like to do. You know, and whether in my sons played instruments, so we were at concerts. I don’t want to take that. My sons were in place.

Dan and Sean have done performances, all the normal things that you do, you can do, you can do that. You know, you might have to take, like I said, it’s a shorter nights sometimes, or it’s a longer night sometimes than you want. You might have to be in the back of the room with the silent room. You might have to have exits.

You might want to tap into some of the opportunities to. For disability boarding an airplane or things like that. But my guys can travel because we exposed them to travel. They could fly anywhere better than most of the people I think in the planes right now.

David Hirsch: That’s fabulous. Well, it sounds like you’ve made an extra effort at including them in all their activities, your typical boys and the others.

And that’s my very early age. So that’s. Some of the dividends that you’re experiencing now. Yeah. To be able to be as mobile as you have been. If somebody wants to get information on the center for enriched living or to contact you, how would they go about doing that?

Paul Koza: Well, I think the center for living website is the easiest way to go.

You can just call me, my email is  pkoza@gmail.com.

David Hirsch: Okay, wonderful. So Paul, thank you for taking the time and many insights. As a reminder, Paul is just one of the dads who’s agreed to be a mentor. Father is part of this special father’s network, a mentoring program for fathers raising a child with special needs.

If you’d like to be a mentor father or are seeking advice from a mentor of father with a similar situation to your own. Please go to 21st centurydads.org, Paul. Thanks again.

Paul Koza: Thank you.

Tom Couch: And thank you for listening to the dad to dad podcast produced by couch audio for 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 your 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: And again, to find out more about the special father’s network, go to

Paul Koza: 21stcenturydads.org,

Tom Couch: 21stcenturydads.org.