433 – Jason Lopez of Bear, DE, Father of Three Including One With Regressive Down Syndrome Disorder (RDSD)

Transcript:

David Hirsch: Enjoy your time with your children because they go quickly

Jason Lopez: Enjoy the moments. I think everyone forgets how short our time is with our children. Right. And so, you know, whether you have a typical, child or a child with special needs, you know, your time with them is very short considering the amount of time that they’re going to live. Right. And so for those new dads starting out, enjoy whatever little moments, whatever blessings you guys get, because they go so quickly.

David Hirsch: That’s our guest this week, Jason Lopez, a leader, mentor, and associate director of manufacturing in Delaware at sdix, a biotechnology research firm. Jason is a father of three, including a daughter with down syndrome. We’ll hear all about Jason, his family and his life on this Special Fathers Network Dad to Dad Podcast.

David Hirsch: Dad to the dad. You’re not on your own. We walk this road together, heart and home.

David Hirsch: Now say hello to the founder of the Special Fathers Network and host of the Dad to Dad Podcast, David Hirsch.

Special Fathers Network Dad to Dad Podcast featuring Jason Lopez and David Hirsch

David Hirsch: Hi, I’m David Hirsch, host of the Special Fathers Network Dad to Dad Podcast. Two brief messages. First, I’m, thrilled to announce our new book, Dads Raising Children with Special Needs and A Guide for 21st Century Dads is now available on Audible, Amazon, Barnes and Noble and other sites. Second, the Special Fathers Network US tour, a 30 day, 50 state, 66 stop tour taking place from May 21 to June 21, Father’s Day. The purpose of the tour is to strengthen and grow the Special Fathers Network, to provide resources to special needs families, and to distribute 2,000 complimentary copies of my new book. For more information on the Special Fathers Network and all the tour locations, see the show notes or simply go to 21stcenturydads.org through every season, in every stride,

David Hirsch: great dads are present. 247365.

David Hirsch: Now let’s listen into this conversation between Jason Lopez and David Hirsch.

Jason Lopez is father of three, including a daughter with down syndrome

David Hirsch: I’m, thrilled to be talking today with Jason Lopez of Bear, Delaware, who’s an associate director of Manufacturing Delaware at SDIX and father of three, including a daughter with down syndrome. Jason, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Jason Lopez: Thank you for having me. David, glad to be here.

David Hirsch: You and your wife Lisa, have been married for 23 years and the proud parents of three children, Kaylee, 29, Jason, 20, and middle child Rebecca, 22, who has down syndrome. Let’s start with some background. Where did you grow up? Tell me something about your family.

Jason Lopez: Sure. So I grew up in, Brooklyn, New York. It was, me, my younger brother, he’s about 18 months younger than me. Our parents were high school Sweethearts. They had grown up in the Williamsburg neighborhood in Brooklyn. But then when they had me and my brother, they moved us to Bensonhurst. it was nice in a sense, where, like, the summertimes were all around. We were close enough to Coney island to always be at the beach in the summertime and stuff like that. my mom was, she, ah, was staying home for many years, and as we got to the end of elementary school, she started going out and working retail jobs. my dad was a merchant marine, so he wasn’t home a lot. but when he did come home, we knew his presence. he was overseas eight months out of the year, you know, on and off. Typically, he would be trying to be home for, summer, breaks, and then he’d come back, you know, try to make it home during the holiday season at times, so.

David Hirsch: And is your dad still alive?

Jason Lopez: Yes, he is. He actually lives a couple, of minutes down the road from me. He spends a lot of his time with his grandchildren.

David Hirsch: That’s wonderful. Dan, how would you describe your relationship with your dad?

Jason Lopez: My relation, my dad now is much stronger than it’s ever been. When I was growing up, it was a little rough because he wasn’t always home and so, and he was always the, disciplinarian. And so like, it was like, hey, the prison, you know, the warden is gone for X amount of time and he comes home, it’s like, oh, this is drudgery, you know, and all that. We always had chores, but, like, when my dad was home, it was like chores on steroids. Right? So it was like, you know, we would sweep and mop every other day. But then when he was home, it was like, oh, wait, you forgot the dusting. You forgot to water the plants. Like, but, you know, as I got older, I understood what he was trying to do and, you know, and our relationship kind of changed. More of being peers at a point, you know, until we, you know, there was a much better understanding. And then once I became a dad, you know, things kind of fell into place and he’s been very supportive.

David Hirsch: Oh, yeah. Well, thanks for sharing. Any important takeaways, lessons learned that come to mind when you think about your dad?

Jason Lopez: You know, I think the most important takeaways I had was the care and importance he put towards family and staying connected. That connection of family and always making time

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Jason Lopez: to reconnect with people was one of the biggest takeaways I ever got. My dad.

David Hirsch: Gotcha. Thank you.

So any other men that played an influential role in your Life. Well, thanks for giving a shout out to these three individuals

So any other men that played an influential role in your Life.

Jason Lopez: I have actually had a couple of school teachers that played a very influential role in my life. So in middle school, I distinctly remember Mr. Kashell, who is my. Our orchestra teacher. so I originally went to middle school and started practicing violin, and Mr. Kishell had suggested maybe I take up viola because of my size and the guys. And he’s like, I really need someone to play the viola. And so I switched over to viola. And then because of that, and he had, like, a summer program, I did that, and I was part of a chamber group with him. And so we toured New York City playing in these little performances with the chamber group. When I got to high school, I continued playing, and then I was actually part of the New York City all city high school orchestra. And so I was close to my high school orchestra teacher, Mr. Alan Goldberg, who also played, you know, keep my music influence going. And in high school, I had a social studies teacher, Dr. Pasnak, who also played an important role, helped me figure out college. so he took a couple of us under his wing our senior year, taking us to visit some of the state schools. We take the day off from school and drive out an hour and a half, two hours out to school. And so that’s how I ended up at Stony Brook for colleges, because that was one of the colleges university took us to see and tour, which I probably would have not even thought of if it wasn’t for him. Yeah.

David Hirsch: Well, thanks for giving a shout out to these three individuals who all played a, influential role when you were a young guy, in the music area and then in the education area.

How did you and Lisa meet? Thanks for being so transparent about that

So I’m sort of curious to know, how did you and Lisa meet?

Jason Lopez: So one of the. My childhood friends from the apartment building I grew up in had moved down to Florida, when I was in college. And then when I got out of college, she always complained how none of the guys in the neighborhood or, you know, in our apartment building ever came down to visit. And I was like, well, I, you know, now I have a job. I have money. I can make the trip down. so I went to visit her, and her and Lisa were co workers. And so she, you know, she introduced me to Lisa, and so we hung out that first weekend and did not get along whatsoever. She could not. She didn’t like me. Like, I’m down there for vacation. She couldn’t stand me. She’s like, oh, you’re obnoxious. I’m like, you know, you’re stuck up. just did not get along that first weekend, and then I went down maybe five months later. And I don’t know what happened the second weekend down there, but we clicked that second weekend really well. And then we’ve been together ever since.

David Hirsch: I love it. Thanks for being so transparent about that. If I ever met Lisa, I’m going to ask her the same question and see if she gives me the same response.

Jason Lopez: I’m pretty sure she’ll tell you he was obnoxious fool.

Prior to having children, did you or Lisa have any connection to special needs

David Hirsch: Okay, well, let’s switch gears and talk about special, needs. On a personal level. prior to having children, did you or Lisa have any connection to the disability or special needs community?

Jason Lopez: I actually had somewhat of an, exposure to special needs down the hall in my apartment, complex. They’re actually on the same floor as I was. Down the hall from us was a family, and they had a. The youngest one had down syndrome. so I’ve always seen someone with down syndrome m. Growing up as a kid, you know, the family was never embarrassed by her. They always, if they were outside, they had her out there. You know, we always saw the, the special needs bus come pick her up and, you know, drop her off. So I had some, connections of it. Lisa, on the other hand, had very limited, personally, I think she had some in the special needs. And when she was, getting her undergrad degree, she had worked in a facility with people’s special needs. But it was kind of a mix. And I don’t think it left a very good impression on her because when we got the news about Rebecca, she freaked out about it. I was a little bit, more calm because of my earlier exposure.

David Hirsch: Yeah, well, thank you for that insight.

Rebecca has Down syndrome, and she was diagnosed in vivo

So what is Rebecca’s diagnosis and how did it come about?

Jason Lopez: So Rebecca has Down syndrome. We diagnosed her in vivo. So we had end up going in for an ultrasound a little too early. And they measured. Her nuchal fold was a little large, for the size and the gestation period. And so they asked if we were on her to do an amniocentesis. so we agreed to doing that. And so we, you know, we found out pretty early on that she was going to have down syndrome, you know, and anything like any kid with special needs, you just, you know, you understand that you got a diagnosis, but you don’t know what that’s going to be like until the kids hear. And so that, you know, there was this some parts of joy knowing that it was down syndrome and not something worse. But at the same time, it’s still, I don’t know what this really means until she’s here.

Lisa’s daughter Rebecca was diagnosed with down syndrome, regression disorder

David Hirsch: Well, whether it was before she was born or after Rebecca was born, what were some of the fears that you or Lisa might have faced early on?

Jason Lopez: So the biggest issues you, you get when having someone with down syndrome

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Jason Lopez: is, you know, there’s always the concerns of heart and digestive issues, you know, whether or not the body part’s going to be, you know, everywhere where they’re supposed to be or something’s missing. And so we actually lucked out with Rebecca. So when she was born, she was perfectly healthy baby girl. And she was, she’s been perfectly healthy, for the most part, all of her life. And so we, we locked out. And so the only thing we have ever noticed with her down syndrome, know the, the developmental delays as she got older, right. And so we got through her first, several, you know, months of no issues. And then, and then the developmental delays started kicking in, you know, slowly over time until, you know, we needed the actual supports. And so, you know, we had early intervention as that came up. And so we, you know, we’ve been blessed in that sense. And but more recently we’ve been running into this issue, Rebecca, that she now has been diagnosed with down syndrome, regression disorder, which has completely turned our world upside down with, Rebecca. And the regression disorder has, you know, I think turned us around and trying to understand who this new person is in our world. You know, so there’s obviously in the name itself, regression disorder where she’s, she’s not progressing forward but she’s actually going backwards. And so now we have this, you know, 22 year old, soon to be 23, that’s essentially a toddler again. So you know, all of her self care thing abilities that she used to have, whether it’s brushing her teeth, taking a shower, using the bathroom on her own, she, she can no longer do any of that stuff without having, help. She’s withdrawn. she used to be very social and want to be out and dancing with her with friends and neighbors. And now she, we can barely get her off the couch. You know, so it’s like signs of depression. You know, there are some issues with her falling asleep and staying asleep. So some night she has insomnia. So you know, we’ve lucked out with melatonin. Typically will help put her back to sleep or help her to fall asleep, but not all the time. You know, and if we don’t keep her on a routine and things change, it makes, it’s that much harder. So like once she feels like, she’s downstairs, she doesn’t want to do any of her morning routine. So if I don’t catch her before she leaves the bedroom, I’m almost guaranteed not going to be able to get her to go to the bathroom in the morning or brush her teeth or do anything like that until it’s just about time for her to go to bed. And so, you know, and there’s, there’s a couple of other, things that we, you know, with the disorder, I think, you know, years ago, it used to be sometimes referred to as late stage autism or early, onset Alzheimer’s disease. You know, because they’re just such a dramatic change in the personality of the person.

David Hirsch: Wow. I’m wondering when this, ah, started to occur.

Jason Lopez: for Rebecca, it was about a year after she graduated, high school. I think there were some earlier signs that we might have missed. but typically with regression disorder, it comes on really rapidly. So, you know, it’s usually within weeks to a couple of months that you get this whole, cascading effect going on, you know, and, you know, when you look it up online or you talk to doctors, they’ll tell you it’s typically, they’ll see it in with patients in transition periods. Right. So a lot of times when they’re moving from a normal routine to something completely different. So transitions in schools, you know, maybe you’re moving, you move away, but something happens. Sometimes it’s either getting over a really bad illness, but something triggers something in them. And it. And it just starts this cascading effect. And it’s not really clear what exactly it is. they think for some patients, immune, some, it’s psychological. But for a lot of our kids, it, it’s typically a transitional period. So, you know, they say females, it’s usually 12 to 15 is a typical age. It started with Rebecca. It was, it happened much later. But with boys, it’s usually that end of high school, beginning of adulthood. And I know that we are not the only family in Delaware, around the same period, had it. And I think the community has taken a much larger interest of it because Covid was such a huge change for a lot of us. And I think a lot more people that, you know, in the special needs community felt it a lot harder. You know, all of a sudden you had, you know, Special Olympics and then m. All your activities and they’re all gone for essentially a year. And then when they do open up, it’s like, well, we’re going to do this, but we’re Going to do it slightly different, you know, and you still can’t touch your friends. You can’t. You can’t hug them. You can’t do this, you know, and now we’re, you know, it’s almost, you know, you don’t see it as much, but, you know, there was such a different world of this and where we went to complete lockdown, and then we slowly reopened everything up.

David Hirsch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in

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David Hirsch: just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents survey. A, link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a great dad coin. Thank you.

You helped start the Delaware dad’s group in 2011

Now back to the conversation.

David Hirsch: So you made reference sort of in passing to three organizations, the dads, which is dad’s Pre Shutting Down Syndrome. I’m sort of curious to know what role you played within that group.

Jason Lopez: So with the dad’s group, we started here in a chapter in Delaware. I want to say it was like 2011 or something like that. you know, we. We got this invite from the Down Syndrome association of Delaware saying, hey, we’re trying to start this dad’s group. You know, come out to the first meeting. And so I went and there was maybe about 20 of us dads at this first meeting. And, you know, we had a representative from DADS come out and explain to us what the dad’s group was about. And so I got involved and like, all right, yeah, I can help do this. And me and one of the other dads in this first initial meeting is like, all right, we need to kind of set up like a little executive board. And so he kind of handled a lot of the, internal stuff that for the DADS group and with the Down Syndrome association, and I became secretary, membership chair, slash, everything else that we needed in the group. and so, you know, I did, you know, made the first set of mailing lists, did all the communications for the dad’s group, try to expand it, as much as we can to our southern dads, because although Delaware is a small state, it’s still very long. And so it’s hard to get those dads down south of Dover to be involved because it’s such a large drive up. And so we try to do a couple of things down there to get them involved. And for the Longest time I was just the person at Delaware for any dad who needed a connection. And, you know, whether or not they were directly associated with the, you know, the Down Syndrome association of Delaware, or they just meet, they’re looking for another dad to connect with. And so I maintained the membership list and stuff. And then after a few years of doing that, we just kind of hit a stumbling block here, where the dads just kind of start falling off. And no matter what we try to do to get him back involved, it was hard to get kind of get everyone into a single room to continue having the meetings. And then I told the downstream, so, like, I need you to find new dads. Like, I can’t keep doing this.

David Hirsch: and then he did.

Jason Lopez: And so it’s like, behind the scenes, dads has. The role has been handed off from dad to dad. you know, usually younger dads, newer, you know, with the new, they’re always enthusiastic about taking over. But on the national website and on the chapter scene, I’m still the point of contact. And so I still get calls and emails. And I’m like, how do people get my information? And then I realized I’m still listed on the national website because, you know, no one else in Delaware has decided to, like, step up and do that. And I don’t mind it. You know, it keeps me connected and grounded to the community, and it allows me to, you know, purposely poke the, new dads in charge. Like, hey, what are we doing? What’s going on? I have questions. People have questions. And so, you know, it has been a wonderful experience being in the dads group. unfortunately, in Delaware, we don’t run it like the, you know, how dads, the national dads, would like us to run it. But, you know, it functions. You know, we find fellowship whenever we can, and I connect people when I can to others when they’re looking for it.

David Hirsch: Okay, well, thanks for sharing. I’m a little bit familiar with the dad’s organization, which started in Indianapolis. Lyle Lichty, one of the dads in the network. I interviewed him like 300 episodes ago, as one of the co founders. And, you know, they do have a national presence. Each, one of the local chapters operates, a little bit differently, you know, within the guidelines of dads. You know, the concept, I think, is to meet on a monthly basis. Whether it’s, for a meeting or go out to dinner or do something fun and, you know, just an opportunity for dads to get out of the house once a Month.

Jason Lopez: Yeah.

David Hirsch: To connect with other dads. You know, you can relate to what’s going on, and their situation isn’t identical, but it’s similar enough. And, usually a, high level of enthusiasm, like you said, you know, the first, whatever number of months that somebody gets involved, and then life sort of gets in the way. Right. And, large list, but a modest number of, dads that are sort of committed to getting together on a monthly basis. You know, it serves a purpose, like you were saying. And I’m grateful for the fact that they didn’t take your name down, because if they did, we might not be talking today. So thanks for sharing.

I think everyone forgets how short our time is with our children

So I’m thinking about advice now, and I’m wondering what advice specifically you might offer a younger dad who’s close to the beginning of his journey, whether it’s a child

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with down syndrome or something else.

Jason Lopez: Enjoy the moments. I think everyone forgets how short our time is with our children. Right. And so, you know, whether you have a typical, child or a child with special needs, you know, your time with them is very short m. Considering the amount of time that they’re going to live. Right. And so, you know, we think 18 years is a long time. But, you know, like, I was visiting my brother, and one of my nieces was doing her first holy communion, and I’m looking at him like, she’s eight now. Like, dude, you only have 10 years left with her. Like, and after that, she’s gone. And like. And it didn’t seem like that, but I’m like, I remember when she was born. I can’t believe it’s eight years later. And so we’re lucky to have Rebecca, you know, although we’re. We’re suffering with her regression disorder. You know, she’s always going to be at home. But my son, he’s 20, going to do 21. I’m lucky if he comes in and wants to talk to me, you know, like. Like he sends me a bunch of Instagram reels and stuff. I’m like, at least he’s thinking about me that he wants me to see what he thinks is funny today, you know? But my oldest one, I’m lucky if I hear from her once a month. Right? And so for those new dads starting out, enjoy whatever little moments, whatever blessings you guys get, because they go so quickly, you know, they’re here one minute and. And gone to next, and you have to enjoy every moment.

David Hirsch: Yeah. Well spoken. Thank you.

You’re part of Delaware’s Special Fathers Network

So why is it you’ve agreed to be a mentor, father as part of the Special Fathers Network, I think I

Jason Lopez: lucked out where in a downtown community, especially here in Delaware, just our size, it was very easy to connect with other dads. Right. And so I don’t think you’re not always blessed in being in an area where you can immediately connect with dads. I know, you know, I’ve talked to some dads, you know, in South Jersey and in, you know, just outside of Philly, and they don’t always have a dad that’s close by to talk with. And so, you know, being involved, and being someone that they can reach out to and talk with, you know, and let them know they’re not alone in this, you know, I think helps, you know, sometimes you just need to lean on someone knowing that they’ve already gone through what you’re going through now and that there is an end to the other side, that there’s someone else survived it, and so you can survive it, too.

David Hirsch: Yeah. Well, we’re thrilled to have you. Thank you for being part of the network.

If you’re not laughing, you’re going to cry, Jason says

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

Jason Lopez: no, just. I think the biggest thing I could tell people is if you’re not laughing, you’re going to cry. And so laugh, laugh, laugh as much as you can. You know, there are times where, you know, I think I explained to you, some other time about Rebecca being here at my office and running out the building and, you know, one of my co workers catching her. And now I can laugh about it, but back then it was like, oh, my God, I don’t know what I’m going to do with this child. But you just have to laugh at the situations, you know, because a lot of times there. There is humor in all of it. You just got to find it, because if not, you’re going to be in the corner crying. I remember my wife, when she was a teacher, for the brief moment she had taught in high school, she went into one of the classrooms and found a teacher bald under the desk. The end of the school day, just crying because she couldn’t handle it. And I’m like, you know, those are the days. You just need to laugh. The students laugh at the predicament, laugh at administration, because if not, you’re just going to go crazy. so enjoy life what you can and find the enjoyment and laughter wherever you can.

David Hirsch: Yeah, I love your spirit. let’s give a special shout out to the Dad’s organization, Dad’s Appreciating Downton for helping connect Us?

Jason Lopez: Yes.

David Hirsch: If somebody wants to contact you, what’s the best way to do so?

Jason Lopez: Probably the easiest way is email. My email is pezshepahoo.com so that’s a P E Z underscore s h p eahoo.com. that’s usually the easiest way to get to contact me. I mean, they can try texting me, 302-897-8590. But the weird thing because of the way text goes, it’s hard not to know whether or not it’s spam or not these days. It’s, you know, with email was like, oh, I could read that. I could tell it’s it. But text is like. Like I get. I got a text today, like, are you going to sell your house? I’m like, who are you? What? Like you don’t even know the area code. So, I mean, I do respond from my text messages. but emails are probably the easiest way to get through.

David Hirsch: Okay, well, we’ll be sure to include that information in the show notes. We’ll make it as easy as possible for somebody to follow up.

Jason Lopez: Sure.

David Hirsch: Jason, thank you for your time and many insights. As a reminder, Jason is 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 are seeking advice from

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David Hirsch: a mentor father with a similar situation to your own, Please go to 21st Century Dads.org Thank you for listening to the latest episode of the Special Fathers Network Data dad Podcast. I hope you enjoy the conversation as much as I did. As you probably know, the 21st Century Dads foundation is a 501c3 not for profit organization, which means we need your help to keep our content free to all concerns. Would you please consider making a taxactical contribution? I would really appreciate your support, Jason. Thanks again.

Jason Lopez: Thank you so much.

Special Fathers Network is a dad to dad mentoring program for fathers raising special needs

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David Hirsch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. 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 m children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21st

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