From My Perspective Series – Interview with Patrick John Hughes and Patrick Henry Hughes

Straight off the stage at OCALICON 2017, our keynote speakers share some additional insight and encouragement for families.

Transcript

SIMON BUEHRER: From the Family and Community Outreach Center at OCALI, this is From My Perspective. Our Inspiring Change podcast series focused on amplifying the voices and lived experiences of people with disabilities and their families through stories that inform, challenge, and inspire. 

TERESA KOBELT: Welcome to From My Perspective. This is OCALI Family Center's weekly podcast. Each week, you'll hear from people with disabilities, their families, friends, and others in their lives. You'll hear about everyday life, their passions, their interests, and opinions. You'll be inspired. You might laugh or cry. But most importantly, we hope you'll better understand what life is like from our perspective. On today's podcast, I'm joined by Patrick John Hughes and Patrick Henry Hughes, a father and a son from Louisville, Kentucky, who just wrapped up their keynote at OCALICON. There was so much about your story and what you all shared that I loved, and I think Patrick John Hughes ... How do you guys talk— Well, first, let me ask that. How do we— 

PATRICK THE DAD: I'm "Patrick the Dad" ... 

TERESA KOBELT: Okay. Then "Patrick the Son." PATRICK THE DAD: ... for your listeners. 

TERESA KOBELT: Yes. So Patrick the Dad, you talked about initially when Patrick was born, having this period of time, where you guys were really grappling with what was going on. But then at some point, eight or nine weeks, you said there was a turning point. Do you remember that time? What was it that helped turn that corner? 

PATRICK THE DAD: I don't know if there was a specific incident that threw us from in the "why us" mode. Why did this horrible, awful thing happen to us? We played by all the rules and then all of a sudden we're like ... I don't know if it was a snap thing. It was more process. But certainly, people ask all the time the hardest parts about raising Patrick. What was the hardest part about raising your son? Really, I think it was those first couple of months where you're just trying to get your arms around going down all these roads and paths that you didn't imagine going down, and giving up ... other ... giving up is not really the right word, but thinking that all the dreams that you did have weren't possible. Which as you saw in our presentation, a lot of the dreams I had for my son came true just in ways we can't imagine when you're going through that. I don't think there was a moment per se, where we just both made the decision. My wife and I that we're not going to become withdrawn and collapse. It was more a process. I say eight or nine weeks because I know there were a couple of months of crying ourselves to sleep and saying, "Why us?" We loved our son. This is our baby. My wife and I, I think it was really great that we had each other. I don't know if I'd have made it, if she wasn't so strong and maybe vice versa. But it was just an evolving decision that, you know what? He's our son. Yeah, things are different than we planned, but life goes on, and we've got to as we had planned on doing before Patrick came in this world the way he was, we've got to make Patrick the best Patrick he can be and give him opportunities to succeed and be whatever he's going to become. That's what we did. Here we are. 

TERESA KOBELT: Yeah. Here you are! Patrick, you described school and not really realizing that you were even blind until preschool when somebody told you that. What was school? What's school been like for you? School experience been like for you? 

PATRICK THE SON: Overall, I think I had a really good school experience. I had great teachers throughout the years. I always had an adult with me. I had a vision teacher who, he knew braille and knew how to get my work in braille and I had an instructional assistant that was like my eyes and legs and made sure I got where I needed to go when I needed to be there. The children were great as well. To tell the truth, I was always more of an adult oriented person because I had an adult with me pretty much all day. But I did activities with the children as well. They'd invite me to birthday parties or school dances or things like that. 

TERESA KOBELT: How about now? Do you have a social life, do stuff with friends? Are you busy traveling? 

PATRICK THE SON: We do a few speaking engagements, probably one or two a month, I guess, and I generally try to keep myself busy. If I'm invited to events, then I'll do my best to try to make sure I'm there. 

TERESA KOBELT: How much time do you spend practicing or even just doing it for fun for your own pleasure? 

PATRICK THE SON: Usually, I'll do maybe a couple hours of piano practice every morning and then anywhere 30 minutes to an hour of trumpet practice and then maybe on occasions, go over there and either play for fun just to listen to music is always a pleasure. 

PATRICK THE DAD: Amazon Echo has been the greatest thing for him. Being able to— and he bought a music package. He loves music and history of music and all sorts of things, so he can go to her, is it Amazon Echo? Did I get that right? 

PATRICK THE SON: Yeah, that's the product. 

PATRICK THE DAD: Alexa. He can go to Alexa and pull music from all over the place. Unlike in my day when I had to find the album and the record player. 

PATRICK THE SON: Good stuff. 

PATRICK THE DAD: Anyway. 

TERESA KOBELT: That's great. You mentioned that you have two brothers who are also musical. Mom's musical. Do you guys ever perform together and do things together? Any of you? 

PATRICK THE SON: The five of us, not really. No. Sometimes Dad and I will do duets, either piano and violin for churches, weddings, funerals, things like that. 

PATRICK THE DAD: Sometimes I'll play piano and he plays trumpet for the same event. But the younger two boys, they were fine musicians. But when they got to high school, their marching band was a really involved high school marching band, and it made it impossible to be in both band and play sports. They chose sports. One played football for four years and the other one was a swimmer. So they kinda went that way. But they've got some musical talent, they just didn't pursue it. We never made anything a contest. We never said, "Well, Patrick makes straight A's," or "why don't you make better grades," or "Patrick can do this." That never happened at our house. Patrick, as I said in our remarks, he taught me that it wasn't about what I wanted my kids to do. It was, what do they want to do? The best thing for Patrick's younger brothers was that Patrick came first and changed dad and my philosophy so that we presented just like we did Patrick, we presented all three of our sons with several different ... with music and with sports and with whatever we could find and let them choose. What do you like and what do you want to do? Then, of course, once they chose something, then Mrs. Hughes was the enforcer that you will stick with it. There's no quitting, so yeah, they did what they wanted to do and they've all turned out well. They're all better than I was as a son. So I'm very blessed. 

TERESA KOBELT: What every parent wants. 

PATRICK THE DAD: Yeah. Absolutely. 

TERESA KOBELT: I've interviewed both people with disabilities and families and one of the common things that comes out, especially with parents, is this idea of they just want to put their child into the world. They love this child and are amazed and impressed and proud and how to do that in a way, how to let the world know that? I think even some of what you have described is that similar ... you loved Patrick, and so how do you get the world and see Patrick? 

PATRICK THE DAD: There where a lot of roadblocks. That's not saying that people are bad. It's just people don't know. We chose, my wife and I said, we're not going to not give Patrick opportunities just because people are afraid. We're going to push Patrick in front of them and change their thinking process. That, yes, you might be uncomfortable and they're afraid they're going to say something that's offensive or whatever, just not knowing. Not out of meanness, but just nobody wants to say the wrong thing. We pushed Patrick out and yes, we got some odd questions and some stares and we just learned to deal with all that and sometimes if people stared too long, then we'd just roll Patrick right up in front of them and say, meet Patrick. This is Patrick. This is our son, Patrick. You look like you might have a question. It could be awkward. I'll never forget one story, we were at somewhere where Patrick was performing as a very young person singing the national anthem at a softball tournament or something. This little boy came up and got right in front of Patrick and just kept staring at him and I was there, and I was watching it all unfold and I was prepared, for whatever this little boy might ask me about my son who looked a little different. He bowled me over. He said, What's wrong with his hair? Of all the things he could have said ... (There was nothing wrong with his hair.) But it was just like, so you're afraid of what people are going to say and people are afraid of saying the wrong thing, so nobody says anything. But then it might just be something like that little kid who just wanted to know something about Patrick's hair that day. You got to take a chance. There was a chance to fail miserably in the marching band in front of 50,000 people on a Saturday afternoon. What a disaster that would be if I didn't make the move or made the wrong turn, and ran over another player or stopped the whole formation. But you just do it anyway. You got to get out. You got to break out of your box, out of your safety zone and make things happen. Take a chance. The worst thing that can happen is that you fail, and then you get up and you forge ahead. 

TERESA KOBELT: Patrick, has your dad had any ideas about ways to put you out into the world that you were like, you got to be kidding me? 

PATRICK THE SON: Maybe a few here and there, but none really. 

TERESA KOBELT: Yeah. And you guys spend a lot of time together, a lot more time than probably most fathers and sons. 

PATRICK THE SON: Probably ever since I was little, he was my first piano teacher. I remember there were days when I was little that I wouldn't just want to play piano. I'd want to play piano with dad. 

TERESA KOBELT: I feel like this is an example of the kind of thing ... a lot of times people think about disability and they think about loss. But one of the things that I've noticed is how much it can actually bring to people's lives. I think you guys' relationship, that strikes me when you talk. You maybe wouldn't have had this. 

PATRICK THE DAD: Being a music major and somebody that was in music his whole life and always had the battle between, I want to play sports. I don't want to go to music lessons. I want to go to the football game or the basketball game or the baseball game, whatever sport I was playing in school. But then I look back on it. When Patrick was born, thank God my mom had the strength and the will to keep pushing me through all these music lessons, and she accommodated for sports as well. Well, she made the sacrifice. She drove me all over the city, getting me from Point A to Point B for all this stuff. But when Patrick was born, I wanted to make Patrick an athlete. My first born son, I had that mentality, and obviously that probably wasn't going to happen. But thank God we had the music thing, and what a gift. Like you say, if he'd become an athlete, then he would've been out on the field doing whatever and I'd be in the stands cheering. But with the way things worked out, what a great gift for a dad. What's really cool, and you can tell this story. About our motivation, how we talked about that years later, how I was motivated by you. 

PATRICK THE SON: Dad, when we were doing classes and marching band and things like that, he also had a second shift job, well, third shift, actually, I think is the correct term. But I was thinking during those days where I didn't want to go to classes or marching band practice, I just have to realize that, dad's doing all this on, what, three or four hours sleep a night? And I got a full night's sleep. 

PATRICK THE DAD: It wasn't planned. I fed off Patrick. I thought, sure, I'm tired and I don't want to go to school. I want to sleep in today or whatever. But then I worked with guys that they did the same work I did on the night shift at UPS. Then they went to a full time job during the day trying to make ends meet. I'd always immediately adjust my thinking if I was feeling downtrodden or overworked. It's like, look how lucky I am. I get to take my son to school and participate with him in the marching band. That always, energized me. We've talked so many times. It's all about your perspective. Do you want to be somebody that's beat up and downtrodden or do you want to find ways to motivate yourself and think of all that you're lucky to do because, what are there, 7 billion people in the world? In the United States, we've probably got it better than ... I don't know, 6.5 billion of them as far as opportunity and hope. For people with special needs children in America, imagine trying to do what you do in another country where they don't have the Americans with Disabilities Act, and they don't have all the lawyers and the people to make sure we're getting services and things we need for our children. There's always good to find. Sometimes it's a little harder than others, and there's days where it's harder to recognize than others, but it's always there if we choose to embrace it. 

TERESA KOBELT: Patrick, can I ask about some of your other musical favorites? You play Ray Charles. He's a favorite. 

PATRICK THE SON: Oh, yes. To tell the truth, I really prefer country music above ... and especially I like some of the modern artists, but I really like a lot of the earlier artists. I like Johnny Cash, Conway Twitty, Hank Williams Senior, Jim Reeves, people like that. But I've actually been very blessed to meet several country music artists that I like and even befriended artists like Pam Tillis, the band Lonestar, Chad Brock, a lady named Lane Brody. Just to name a few. 

TERESA KOBELT: You play piano and trumpet? 

PATRICK THE SON: Right. TERESA KOBELT: Do you prefer one or the other? 

PATRICK THE SON: They're both fun. But I guess if I had to pick, it would be piano because to me, the way I see it, piano, you just have to worry about making sure your finger hits the right key at the right time. Whereas trumpet, you have a whole list of things to worry about. How to hold the instrument, how much air to put into it, what kind of sound you want to produce. Things like that. 

TERESA KOBELT: Do you have other hobbies? Not that music is a hobby. Obviously, it's much more than a hobby. P

ATRICK THE SON: I guess, another thing I'm really big into, I really like television game shows. I hope to host one, one day, and I've been a fan of game shows for quite a few years and love those of today as well as some of the classics from the 70s and 60s even to the 50s. 

TERESA KOBELT: If you could bring one back and you were the host, which one would it be? P

ATRICK THE SON: Actually, I had a dream of bringing back the Hollywood Squares, but in a different format, I was going to call it Nashville Squares, and have country music stars in the squares. Yeah, I made an attempt, and it hasn't happened yet, but, you know, never say never. 

TERESA KOBELT: I think you guys are the epitome of "Never Say Never," if there's anything that you two set your mind to. I have a feeling that you could do it. 

PATRICK THE DAD: We gave it a try. We went outside the box and spent some money and tried to get the Nashville Squares thing rolling. But it's very difficult to break into that world. Most game show hosts didn't start out as game show hosts. They did something else first and then eventually it happens, but who knows? We don't ever give up. We just ... there's setbacks, and you keep trying and you attack from another angle and see what happens. 

TERESA KOBELT: Another question I usually ask the parents, but I'm curious in this instance, Patrick, I usually ask what your proudest parenting moment is, but I feel like I'd be curious to know what your proudest moment of your dad is. 

PATRICK THE SON: Us performing at OCALICON. 

TERESA KOBELT: Oh! Was your proudest moment? Yeah. 

PATRICK THE DAD: That's a good answer. 

TERESA KOBELT: Yeah, that's right. That's a good answer for that. 

PATRICK THE DAD: You have another one? 

TERESA KOBELT: Yes. 

PATRICK THE SON: I don't know. That's a good question. 

PATRICK THE DAD: A question he's never been asked. What's his proudest moment of his dad? He'll have to think on that and get back to you. 

TERESA KOBELT: How about you? Proudest parenting ... or, you thought of one? 

PATRICK THE SON: Well, actually, it would be not with dad, so to speak, but. 

PATRICK THE DAD: With who? 

PATRICK THE SON: Well, I think my proudest moment, period, for me, especially looking back and being the country music fan that I am was getting to perform on the Grand Ole Opry, which I actually did twice, once with Pam Tillis, whom I mentioned, and then a second time with Lonestar. Then, you know, to be able to enjoy the artists of yesteryear so to speak, that I enjoy and knowing that they performed on the Grand Ole Opry stage, too, it just even today amazes me. 

TERESA KOBELT: How about you? Proudest parenting moment? 

PATRICK THE DAD: There's obviously been so many through the years. Probably one of the earliest proudest moments was Patrick's first crusade for children performance. It was a live performance. Actually they did a play on it in our movie, "I Am Potential," where they showed me ... they showed me backstage, cheering him on and he did a great job and I was a nervous wreck. But he got in front of the audience and played and sang. The lyrics that he sang in this song that we wrote for the Crusade for Children, which is a local charitable telethon. I was standing just behind stage with the lyrics in case he got stuck, but he just nailed them. The audience went crazy jumping out of their seats. Because everybody in Louisville ... it's like the movie "The Truman Story." Everybody watched Patrick grew up on TV in our hometown of Louisville, Kentucky. But to just be offstage and watch him nail that moment, I guess you were ten, eight? 

PATRICK THE DAD: Nine. 

PATRICK THE DAD: Nine. I was close. Yeah, I'll never forget that feeling inside of me of that moment about how proud I was and how great I felt and the audience, rising to the occasion as well. It was just the culmination of so many great things. Patrick has gone on to do so many ... going on the field with him the first time in the marching band was obviously a very proud moment. How many parents get to do that? March with their son in a major college football game? It's ridiculous. That was another moment. A lot of these speaking engagements we do in front of thousands of people. I'm always so proud of him. He's never let me down in one of these type events. He's just a great entertainer. I could go on and on. 

TERESA KOBELT: Yes. I didn't realize that you write your own music too. 

PATRICK THE SON: Yeah, I've dabbled in it a little bit. I guess I've written maybe about 20 or so songs, but mostly I do covers. 

TERESA KOBELT: Well, you do it well. 

PATRICK THE SON: Thank you. 

TERESA KOBELT: It's really been a pleasure to hear from you guys. I looked around. I will admit, myself. As I was looking around the crowd, lots of just big emotions in the room today. Really great to hear stories of hope. 

PATRICK THE DAD: Good. 

PATRICK THE SON: Well, we enjoyed it. 

TERESA KOBELT: Yes, thanks so much. 

PATRICK THE SON: Thank you. 

PATRICK THE DAD: Thank you. 

TERESA KOBELT: Thank you for listening to this episode of From My Perspective. If you would like to learn more about OCALI and its resources, please visit ocali.org.