003 – Skip Gianopulos: Raising Four Daughters Including Two With Down Syndrome

Transcript:

Dad To Dad 3 – Skip Gianopulos: Raising Four Daughters Including Two With Down Syndrome

Tom Couch: This is the Special Fathers Network 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 children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers.

Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids. If you’re a father looking for support or if you’re a dad who’d like to offer support, go to 21stcenturydads.org. That’s 21stcenturydads.org.

David Hirsch: Hi, I’m David Hirsch.

This is the Special Fathers Network podcast stories of fathers helping fathers.

Skip Gianopulos: There are days where our special needs kids are a whole lot easier than our typical kids.

David Hirsch: Really?

Tom Couch: Yes. That’s Skip Gianopulos, David’s guest today. Skip has the distinction of being the father of not one special needs child, but two.

Skip Gianopulos: Particularly with down syndrome, there’s no predisposition to having a second child with down syndrome, once you have your first. So literally it is like lightning striking twice. In fact, I’m thought a little bit about buying lottery tickets after that. It’s an inspiring story of taking the cards you’ve been dealt and winning the hand. Yeah. So I really give my wife a lot of credit for stepping up and reaching out, trying to build a network of people that, um, you know, had some commonality to our new reality.

Tom Couch: Skip and his wife, Gail, have been instrumental in helping to form Gigi’s Playhouse, a nationwide network of community centers that provide a positive atmosphere for families with special needs kids.

Skip Gianopulos: Having a voice of encouragement and a positive message that comes through, especially in those early days, is has been a critical part of Jesus’ Playhouse success.

Tom Couch: And now here’s your host of the 21st Century Dads podcast, David Hirsch.

David Hirsch: Being a father is very important to me. Being a good father means being a successful role model for your child, helping them be happier, more fulfilled, and productive members of society. I’ve started a number of charitable organizations designed to increase the role of fathers.

One of them, the Special Fathers Network is a dad to dad mentoring program for fathers, raising children with special needs. We’ve been interviewing some exceptional fathers of special needs kids and we want to share their stories wit you.

Tom Couch: So let’s get to it. Here’s David Hirsch’s conversation with Skip Gianopulos.

David Hirsch: Skip. Thank you for taking the time to do a podcast interview with the Special Fathers Network.

Skip Gianopulos: Thanks for having me.

David Hirsch: Uh, we’ve been friends for more than a decade. We live in the same community. You and your wife Gail, have four daughters, uh, ages 16 to 10. Uh, your second oldest daughter, Jessica, uh, with downs and, um, another daughter, Cassidy, number four, with autism and downs, uh, while an attorney by education and training, uh, you’ve spent most of your 20 plus year career in the financial services, uh, business here in Chicago. So, uh, let’s get started with some background. Uh, give me a sense for where you grew up and how that influenced you.

Skip Gianopulos: I grew up in Barrington, which is the Northwest suburban community in the Chicago land area.

Uh, I am one of three kids. Uh, I’ve got a younger brother and a younger sister. I came from a traditional family where my father worked. My mother stayed at home with the rest of us, and, um, had a very, you know, what I thought was a very typical childhood.

David Hirsch: Okay. So, sadly, we both lost our dads a few months ago. Uh, so my condolences again to you. And, uh, I remember attending your dad’s Memorial service, or, you know, wake. And I was like, Oh my God, I’ve never seen so many people at a wake before. I mean, people were literally lined up out the door. And it took like hours to get through the receiving line. Um, and he was a doctor, so he touched a lot of people’s lives. So I’m sort of curious to know what influence that he had on your life.

Skip Gianopulos: Well, uh, yes, he was, uh, had a huge circle of influence or something like over a thousand people that signed that guest book. And uh, apologies for how long you had to wait in that line. I understand it was close to three, three hours or so.

David Hirsch: If the truth be known, Kevin, got me in the back door.

Skip Gianopulos: I used to know people. Um, but yeah, he was always focused on helping other people, and that’s kind of the environment that I grew up in. Uh, incidentally, he did talk me out of getting into medical, uh, medical business or medical practice. Um, he saw the socialism of, uh, the whole profession. Uh, going in a way that he didn’t think was, was overall good for medicine. And he saw that, uh, is, is way early, but, uh, he kind of steered me away from medicine, but ultimately did wind up in a profession that is. What I consider a helping profession, helping people navigate through their own financial affairs.

David Hirsch: So, um, I don’t think we’ve ever talked about, uh, your grandpas, did they play a role in your life? Did you get to know them as adults?

Skip Gianopulos: You know, I really didn’t. They were, um. They both married younger women and they married at older ages, so they were not engaged at all in my life as a growing up.

David Hirsch: Where there another, uh, father influencers, um, other than your dad then?

Skip Gianopulos: There were, I was very involved in my church youth group, and so I would say my youth pastor was, uh, his name was Don Ferris.

Great guy. Um. Also had some, uh, people that were volunteering through that ministry that had a big impact on my life during those formative years.

David Hirsch: Let’s talk a little bit about your connection to the special needs community. Uh, you mentioned earlier that, uh, you grew up in a pretty homogeneous environment and didn’t have much exposure to that.

Um, and, uh, you and, uh, Gale been married for how many years?

Skip Gianopulos: 24.

David Hirsch: And, uh, you have four daughters.

Skip Gianopulos: Yes, as I like to say, I’m a minority in a sorority.

David Hirsch: Oh, that’s a good one.

Skip Gianopulos: Yeah, so we have four daughters. Our oldest, Stephanie is a junior at Barrington High School. Our second daughter, Jessica, was our first daughter born with special needs.

And, um, you know, as I kind of think back to that time, uh, I did not know a lot of kids with special needs growing up, and we did not have any advanced warning that Jessica was going to have down syndrome. So literally we found out about. Her diagnosis in the hospital delivery room. And it was shocking, you know, I remember, uh, just, you know, being in the financial planning industry and in business jumping way out into the future, thinking about what retirement was going to be like with a adult child living with us.

And, um, you know, really probably came to some very negative pictures of what my life was going to be like. Um, and I would say it was a, it was a dark spot to be in. Did not have any people that I could, uh, reach out to that had been there before. I was so felt a little bit alone. And, um, I remember, I remember one of the first phone calls I made, uh, was to my brother.

And, um. You know, his comment was, I guess there’s going to be no more short bus jokes in our family. So, you know, it just goes to show a little bit of how we, you know, we just really did not have any real connection with special needs community.

David Hirsch: Yeah. Well, um, one of the things, I admire a lot of things about you, but one of the things I admire about you is the commitment to your family.

Right. And, um, yeah. Um, it’s sort of, the expectation is when you start your family or when you start to have more kids for that matter, is that, you know, you’re going to have a normal delivery. Mom and child are going to go home from the hospital, you know, and everything’s just going to work out. Right. Um, and sometimes it doesn’t.

Right. Uh, you know, God has a different plan for our lives. And, um, that was your first exposure then, um, when Jessica was born?

Skip Gianopulos: Yes.

David Hirsch: And, uh, you mentioned that, uh, you seem like that was a little bit of a dark spot. Um, so what were some of the things that you and Gail had to do to. Adjust if you will. Um, to the new reality.

Skip Gianopulos: Yeah. So I really give my wife a lot of credit for stepping up and reaching out, trying to build a network of people that, um, you know, had some commonality to our new reality. One of the first things that my wife Gale did was reach out. Just through networking to try to find other people that had kids that were in the district 220 which is our local school district, other kids within the district, 220 that had special needs situation.

And so we wound up getting five other families together. No one knew anyone else, but we all kind of were brought together and I remember very well was. 14 years ago at Mill Rose, a restaurant, which is no longer, and um, Oh, I think we met there probably at something like  7:30. And we wound up closing the place down 11 o’clock. They were kicking us out. And, um, as a part of that initial connection, that’s when an idea of having a. Resource center. And that’s really where Gigi’s Playhouse was born. So we were part of the founding group for that.

It was a very important thing for us, is to build a network of people that had that special needs, commonality and some of those folks, um, in fact, all of those people were in the spot that we were before us.

So getting some advice and, and, uh, some help along the way was instrumental.

David Hirsch: Okay. So. You go on to have more children. Right. Um, which I imagine maybe you thought twice, right. You know, with the challenges that you were already in countering and the uncertainty, you know, of all that. Um, so you have a third child and a fourth child.

Skip Gianopulos: Yes.

David Hirsch: And, uh, lightning strikes again.

Skip Gianopulos: Yeah. And particularly with down syndrome, there’s no predisposition to having a second child with down syndrome once you have your first. So literally it is like lightning striking twice. In fact, I’m thought a little bit about buying lottery tickets after that. As they say, it’s a tax on people that are bad with math.

But, um, you know, it was very unlikely to have two, two kids with down syndrome. In fact, we don’t know any other families. That are in, in our spot naturally. We know some people that have adopted a second child with down syndrome, but, um, yeah, very unusual.

David Hirsch: Uh, so what additional adjustments have you had to make as a result of that?

Skip Gianopulos: You know, one of the things that makes our family a little bit unique and a little bit different is we just do not have the ability to spend the same amount of time with our typical kids as we would otherwise want to. Uh, the time demands for having a child with special needs are, are higher, you know, so that, that is one thing that is a little bit unique in terms of our family and the family dynamics.

What I will say is that both of our typically developed kids, have really embraced our situation. And I think our overall family dynamic is, is terrific. I think that they have become better people as a result of having siblings with special needs.

David Hirsch: So one of the challenges is balancing the time and the resources that you have. Limited time and resources that we all have to each of your kids. Right. And it’s not like if you have four kids, everybody’s going to get 25% and whether they’re typical, right? The phrase you used or non-typical. Yeah. Every child has different demands. Some are more self sufficient, they’re more resilient and others just have different challenges. Right. That’s just being a parent really. So is there something that you’ve been able to do or to compensate that you are more intentional or Gale is more intentional about making sure that a Jessica and her other typical sister, you know, are sort of, you’re being equitable with them?

Skip Gianopulos: There are definitely, um, ways we’ve adjusted for that.

So, one, you know, when clear example, uh, you know, would be, uh, a summer camp. Um, our church has a camp, a dad daughter camp. That is up in the upper peninsula of Michigan. And, um, you know, it’s one of these, uh, places that is very difficult to get to. It’s about nine hours away. And, um,

David Hirsch: I rode my bicycle there.

Skip Gianopulos: Yes you did. Yes, you did. And I was, I was watching it. It was not very far from where we were at, but, um. That camp goes from ages eight to 12, was very intentional about making sure that each of our typical kids, both Stephanie and Alison, uh, that we, we got to have the chance to get up to that camp, uh, all five years that they were eligible. And, um, you know, it was a really rich time. It’s really a week of one on one time with, with a kid and coming from the family environment that we have. Um, with a lot of concentrated time together and it was just a, a wonderful experience. In fact, um, I’m remembering a story going up are either a second or third year with Stephanie and when you’ve got nine hours in the car, you know, you’ve got plenty of time to have conversation about different things.

And so, uh, we’re just making conversation. We had just got back from a very nice family vacation in Colorado. It was a high end dude ranch. Everyone, every kid had their own horse for the week and a wonderful experience. And so just talking a little bit about vacations, and we had bended Disney. We’ve been in a few places, and that’s whem I said, Stephanie, if you could go anywhere in the world, you know, where would you go? And she, she looked at me like with this puzzled look like I had lobsters crawling on my ears and said, “dad, we’re going there now.”

So this little camp. Where were you literally in, in sleeping bags and non air conditioned cabins. It’s very rustic. There’s no electricity. There’s no running water. Uh, I won’t, I’ll spare the details on what the bathroom facilities are like, but you can imagine, um. It was, uh, just eyeopening to me that the value of her spending time with me, her dad was so high that that really, you know, that was the overriding determining factor for, for her the way she would judge an awesome vacation.

So that spoke a lot to me in terms of how important, just spending time. With with your kids is.

David Hirsch: Yeah. Well, that’s a fabulous story. The first thing that came to mind when I’ve had a chance to drive long distances with my kids, and now they’re older, uh, that we’re going to split the driving, right? So when I’m driving, I’m thinking we’re going to have these meaningful father child conversations and what. The reality is that they’re sleeping, right? I’m just the driver, right? They’re snoozing and relaxing or other got their headset on, listening to music. So what I’ve learned, uh, from an older dad to a younger dad is that when the kids get a little bit older, you have them do the driving cause then they can’t sleep. You can have the conversation that you’re looking to have.

Skip Gianopulos: And there’s a good friend has told me before, you know, there are conversations that happen on, uh, on road trips that don’t happen on airplanes. You know, having that time to set apart where provides an environment to have the conversations is half the battle sometimes.

David Hirsch: Yeah. When I found it’s not, it’s not even necessarily the long drives, right? Sometimes you’re just picking the kids up, dropping them off, and you’ve got 10 or 20 minutes, um, and you know, just something sparks, right? You just have this spontaneous conversation and it’s really powerful. Right? So I think it underscores the importance for dads, uh, not to think about just spending quality time with their kids, but really the quantity of time, right? Because you never know when these conversations and these experiences are going to occur. So thanks for sharing. That was really powerful.

So, um, one, uh, you think about, uh, the experience you’ve had for the last 16 years being a dad uh, you’ve shared a story or two. Are there any really strong memories uh, that come to mind, um, whether it’s as a whole family or someone on one time with one or more of the girls?

Skip Gianopulos: You know, there’s a lot of stories that come to mind. I would say. Um, some of the richest times that we’ve, that I’ve had with my daughters that have special needs, you know, are those one on one times, you know, there’s a benefit in terms of, um. So our kids grow up too quickly. Right. As you very well know, um, before you know it, they’re out of the house.

David Hirsch: You blinked right they’r in high school, you blink again, they’re in college and you blink again and they’re gone.

Skip Gianopulos: Yeah. Yeah. And so, you know, that’s one of the things that will, I think will be a special, um, opportunity is that we’ll get the chance to have our kids with special needs around for a little bit longer.

And, um, particularly with down syndrome, you know, these are kids that just have a huge heart. And very loving. And so I would say regularly, I’ll walk in the house, you know, with a house full of teenage girls. I would say that there are some times when I don’t get greeted with the full hug. And in fact, more often just to get ignored when I walk in.

But I tell you, our kids with special needs are the first ones there to, uh, to give you a hug and to, to greet you when you come in the door. And, uh, so much love.

David Hirsch: That’s fabulous. So let’s talk a little bit about the support structures, right. You’ve made reference to incidentally, to one or two of them. Um, I happen to know that there’s a pretty strong Best Buddies program at, um, Barrington High School and maybe Barrington middle school for that matter. So, uh, tell me what your experience has been with that group and maybe some others that are at the high school.

Skip Gianopulos: So part of the dynamic of having a typical kids kind of, um, in a, in a family with kids with special needs is that they’re, for example, Stephanie, our oldest, uh, just has a huge heart for not only her siblings with special needs, but really all kids with special needs.

So Barrington Buddies is something that she has engaged in and been involved in. She’s also been involved with our church Willow Creek Community Church in a, um a number of ways. But, um, most recently, both of our kids, both of our typical kids have been mentors to kids with special needs in a drama program.

They did a performance of Lion King Junior, and, um, it was through Willow Creek Church. Uh, all four of our kids were involved. Uh, two as, as they referred to as artists, which are the actors or actresses. My case and the other two as mentors.

So, uh, you know, just as an example, Alison daughter number three was, uh, her artist was in a wheelchair.

It was a, a wonderful young young girl who was born typically, but had a brain tumor and as a result is in a wheelchair, and he had some, some speech issues. Uh, Alison throughout, uh. Probably a two hour performance while winds up making sure her wheelchair is in exactly the right spot at the right time. Didn’t need to remind her of any of her lines cause her artists did a phenomenal job preparing.

But um, you know, she took it very seriously. She did an excellent job and it was kind of puzzling to me how she could make sure a wheelchair got in the exact right spot for 80 different, you know, patterns, but yet she can’t put her cereal away after she eats breakfast in the morning. It’s still a little puzzling to me, but, um, in all seriousness, uh, they all, they all did great and they all are very engaged with the special needs community in general.

David Hirsch: Okay. Well, it sounds like a. The girls have all been involved on with Best Buddies or barrington buddies. Yes. Right. Uh, two as mentors, uh, and the other two as,

Skip Gianopulos: You know, as being teamed up with other typical kids. Yeah.

So Barrington Buddies is a way that a typical kids can get paired up with, um, a buddy that will have special needs and they are on the lookout and just being a general help and assistance to that person throughout the school day. And there are also some activities afterschool that they would do together as well. And it’s a wonderful program.

David Hirsch: Right? And it’s not just a Barrington high school.

There’s a program at different schools around Illinois. There’s a, um, best buddies, Illinois, and I think there’s a best buddies in each of the States. Right? And now it’s international. It’s a pretty big program.

Skip Gianopulos: And I believe Barrington has kind of split off of that to create Barrington Buddies for reasons that are not known to me. But that’s a little bit, and I’m not even sure what the differences are, but yes, it’s a very similar program.

David Hirsch: Okay. So, uh. You made passing reference earlier to Gigi’s Playhouse, right. Which is a world class facility, facilities. Right. Which started in Hoffman estates. Which is pretty close to where we live.

So why don’t you dive a little bit deeper into that? You mentioned that you were one of the founding families, right. And there was actually a person named Gigi, right?

Skip Gianopulos: Yes. Uh, Gigi is my daughter Jessica’s has a best friend. Uh, they do quite a bit together and, um, Gigi and Jessica are about six months apart.

So Gigi’s Playhouse has kind of grown up right alongside of our Jessica and, and certainly Gigi as well. But, uh, Gigi’s Playhouse is a resource center for, uh, kids and families of kids with special needs. And particularly with down syndrome. As time has gone on, it’s expanded, um, in terms of the program offering and it’s now, uh, expanded quite a bit in terms of its footprint as well.

From one location in Hoffman estates, it’s grown to about 30 locations,

David Hirsch: I think 33 at last count.

Skip Gianopulos: Okay. Yeah. Yeah. So, uh, yeah, 30plus locations all across the country and even one location in Mexico as well. So it’s, it’s, uh, had a, uh, significant, uh, impact. It’s obviously, um. Meeting a need for the down syndrome community in particular. And, um, it’s been exciting to watch that organization grow.

David Hirsch: So describe how it works, just so I have a better understanding. Right. A family, uh, learns that they have a Down’s child and, uh, they’re, uh, during the headlights for whatever period of time. Um, they, uh, are seeking resources. Um, they get exposed to Gigi’s Playhouse.

Uh, what is that experience like?

Skip Gianopulos: Yeah, so, and there’s a couple of, of, um, you know, I’ll say kind of educational resources. So one of the things that is a little bit. Challenging, um, for family with that would be expecting a child with down syndrome is that the medical community, I would say has tended to be focused on more of the negative medical elements of having a diagnosis of down syndrome versus, uh, embracing the positives that go along with that.

So part of what Gigi’s Playhouse has, uh, had had a focus on reaching out to the medical community, providing materials so that, that doctor that initially provides a diagnosis on the spot can make a connection and provide some, uh, encouraging materials to that, uh, that mom, that dad. And help, you know, kind of from the, from the start.

So when somebody first gets a diagnosis, and we’ve had many people with their babies still in utero, coming into the Playhouse, sitting on the couch, having the chance to see other kids with down syndrome, play, interact, experience, love, and hopefully create a, a more positive image of what their life is going to be like going forward.

Um. It’s so easy to just see the negative pieces of that. And having a voice of encouragement and a positive message that comes through, especially in those early days, is, has been a critical part of Gigi’s Playhouse success.

David Hirsch: So somebody, I thought it was once the children were born, what you’re saying is that, uh, there’s a, you know, an opportunity in advance of having a child, um, and, uh, there’s different activities. Um. Or programs, depending on the age of the children, and do they age out or they just keep going? I know that Gigi’s Playhouse has been in existence for what, 14 or 15 years? So some of the older participants are probably 14 or 15 years, but maybe not necessarily limited.

Skip Gianopulos: You know, so there are quite a few people that are in their twenties and maybe even early thirties that are part of Gigi’s University. Where now. As the organization has evolved, uh, getting more involved with vocational training, getting more involved in just education in terms of good eating habits and, and, uh, personal hygiene, physical fitness and those things.

David Hirsch: Okay. That’s fabulous. Um, and it started right here in the Chicago area.

So you, you mentioned that, umm you’re providing  information orGigi’s Playhouse provides information. Um, so to doctors and through the healthcare, um, field. And, uh, what influence do you think that that’s had on, um, doctors or parents, right when they get this news instead of thinking negatively. Do you think it’s had the intended impact?

Skip Gianopulos: Yeah. Well, as you may know, the rate of terminations of pregnancies where the mother knows about a particular diagnosis, and in this case down syndrome, uh, I believe the. The number is something like 90% of pregnancies wind up being terminated where the mother has an advanced notice of a down syndrome diagnosis.

In fact, it was, um, really disappointing to me. As I mentioned earlier, we knew, uh, in advance about our second daughter Cassidy’s diagnosis. And, uh. Now withstanding the fact that the doctors knew we already had a daughter with down syndrome, they sent us to a, uh, um, a genealogist, I believe, is that the terminology?

And he is literally asking us if we want to terminate the pregnancy. And I’m thinking to myself, you know, we already have a daughter with down syndrome, would you? Why are you even asking the question? And secondly, you know, it, it also implied, you know, do we regret having our first daughter? You know? So, I mean, it was very shocking to me the insensitivity that the medical community has towards down syndrome in particular, but I’m sure goes to all special needs.

David Hirsch: Yeah. Well, that is amazing, right? To just hear you recount that story, and I wonder, you know, if this is more like a business, right? You know, if, uh, you’re going to a genealogist or whatever the phrase is and they’re predisposed is to suggest that, you know, we, it would be a lot easier. Right. You know, if you make that sort of hard decision now, right. To avoid the great unknown. Right. I think it’s a sort of a holdover to maybe a generation or two ago when you have a special needs child, that the idea then was to institutionalize the child. Right. You know, it’ll. Be a lot better for the child was the rationale, and it will be a lot easier for you. Right. And there are story after story of people that said, no, I’m not going to do that. Right. Even though that might’ve been the norm back then, I’m not going to do that. Right. I want to raise my child. I want. To be the person that influences my child, that passes along those values. So it seems like the world’s evolving, but maybe not.

Skip Gianopulos: Yeah. And we’re hoping that the message to the medical community, this positive message and that kids with down syndrome, you know, have value and that they can bring, uh, an element of love and care and happiness and do a family that, you know, might not otherwise exist. We’re hoping that that message is going to override some of the things that they have really been trained up behind.

And when you think about the medical training process, really all they see are the medical negatives that come out of a diagnosis like that. Half of all kids with down syndrome are born with a hole in their heart. So most, I shouldn’t say most, half of the kids that we know have a big scar on their chest and have gone through open heart surgery, uh, multiple times.

And, you know, as a medical provider. That’s, I guess, seen as a negative in, they’re just not seeing the positive side of the coin.

David Hirsch: Yeah. Well, thanks for emphasizing that. That’s really powerful.

So, um, Willow Creek Church, um, big operation, a lot of different ministries there. And, uh, I’m just tangentially familiar with the special friends program. So if you could. Sure what your experience has been with that and, um, what type of resource that is.

Skip Gianopulos: Yeah. So Willow Creek, uh, is a very large church in the Chicago land area. About 20,000 people on a weekend are coming just to the South Barrington campus alone. There are five other campuses in the Chicago land area, so you’re right, it is a large operation.

One of the things that has always impressed me about Willow Creek is the way that that organization has been led to expand its uh, essentially expand the heart of the church to reach people that, um, we might not ordinarily think about, uh, reaching. So one example of that outside of special needs is the Willow Creek care center.

So they’ve got a unbelievable. Facility that includes both a food pantry, um, and a cars ministry where there were, uh, six bays. Now that, uh, they will take in older cars that we’ll use. Um, donated, uh, help from, from people that are part of the church to repair cars that are, um, for people in need. Uh, they also will accept cars as donations, fix them up and give them most, typically to single moms.

Uh, there’s a vision clinic, there’s a dental clinic, there’s some, there’s a huge outreach to the low income, uh, part of our community. That’s just one area where. The heart of our church has been enlarged really through the leadership of Willow Creek, uh, Willow Creek church. The special friends ministry is also part of that.

So, uh, about a year and a half ago, they built a very, really a state of the art facility that is very um, uh, accommodating to people with special sensory issues. And it’s about a million dollar facility. That ministry has not only served the people within the church well, but it’s also been an excellent outreach as well.

Uh, that ministry has grown by over 150% over the last year. And through things, as we’ve spoken about earlier, the, uh, the performance of Lion King Jr and other, other past performances has really met a need in our community that hasn’t been met any other way. And, um, Willow Creek church has been a wonderful part of our, uh, kids with special needs just every week. Look forward to going there. And it’s, uh, they’ve done an excellent job accommodating, um, and making people with special needs feel welcome.

David Hirsch: Yeah. Well, it serves a lot of different purposes, right. Um, families with special needs might not be inclined to go to church. Because of the challenges of bringing a child into the worship space. Right? So there’s this opportunity for the parents to have their kids in a safe place while they’re worshiping. Yeah. And then there’s all these other activities beyond the worship time for the families to interact with one another. Right. And for the kids to be in an environment where they’re with other kids with similar experiences. And has your whole family been involved with that?

Absolutely. Yes. Yeah.

Skip Gianopulos: Yeah. My daughter Alison, um. End up taking her early to church so she can go to her junior high, small group. And then after she’s done with that, she goes down to the special needs area to volunteer, uh, helping out kids with special needs.

David Hirsch: Okay. That’s fabulous. So, uh, switching gears a little bit. Uh, Judson University. Um, you and Gale have been pioneers. I think of you as pioneers with this Rise program. Um, share with me where you’re at with that and what your expectations are.

Skip Gianopulos: Well, first of all, it’s really more, uh, Gale. I’m going to be more proud of what she’s done there. And it was really her vision, her idea to, um, uh. Develop a program where kids with intellectual disabilities going to have a more typical college experience. You know, as we were talking to our kids about going to college and sitting around the dinner table, one of the things that my wife, Gale would be a little bit sad about was the fact that our kids with special needs might not have the chance to have the kind of college experience that both, both she and I had.

And, um. She started thinking about why that needs to be that way. She really started thinking about ways that that could change and so came up with the idea of creating a two year program. Um, where kids with intellectual disabilities could be a part of the college life, college campus actually live on campus.

Uh, there would be a, you know, in the case of the Rise program, there’s a student, whole group of student mentors that are involved, but student mentor to help those kids, uh, assimilate into dorm life to make sure that. Um, you know, things were going as well as, as planned and actually living with the kids.

Um, so Gene Croom, the president of Judson university, once he heard the idea to, to Gale’s surprise, the first thing he said was, “why aren’t we doing this already?”

 And so it was a very. Um, Gene had a big heart for serving this community. And, um, within a relatively short period of time, it was presented to their board of trustees and it was approved.

So it was approved with a challenge to raise some funds and approve of the, uh, a mountain of work ahead of it. But, um, you know, we were, we were up for the task and, uh, this fall. Judson will admit its first class of kids in the Rise program. It’d be 12 kids part of the program. And, um, the entire university is, is buzzing with excitement about it.

So it will be, uh, not only great for these kids, but the mentors to these kids I think are going to get so much out of the program. Um, Judson also has a special education teaching area that will be involved in this, in this process. And it will also have a vocational element to it as well. So during the second year, primarily though, they’ll focus on, uh, some specific job skills.

So it’ll be a way to teach these kids to be independent, uh, some good life skills and to give them the kind of social experience that, uh, those that go away to college will enjoy having.

David Hirsch: Well, that’s fabulous. I so admire, uh. Gale’s vision, her leadership, and, um, with a husband like you in the financial services industry, I’m hoping that, uh, raising the funds to help meet that challenge will be a little bit easier.

Skip Gianopulos: That was, that was my job and that went, that went well, so, yeah. Excellent.

David Hirsch: Yeah. Well, uh, I look forward to learning more about the Rise program as the years go by. So, uh, when you think about each of your girls, um, the typical ones and the others, uh, what would you say are some of your proudest moments for each of them?

Skip Gianopulos: Yeah. You know, I would say for our oldest daughter, Stephanie, uh, she was a reluctant participant in double track and cross country. Um, highly encouraged would probably be an understatement in terms of our, our, uh pushing her to get involved, but, um, you know, just proud of her overcoming that fear and ultimately wound up embracing that, uh, program.

Probably a little less for the running, more for the social element of it, but, um, she has really enjoyed that and has become a big part of her life. You know, I would say that, um. Jessica, um, has just done such a great job in terms of being independent. So think about this for a, this would would have been last year in eighth grade, even for summer school this year. She would. Tell us when she’s ready to go to bed. She would shower, she would brush her teeth. She would put herself to bed. I would, I would go pray with her. She would set her alarm clock. She would get up on her own, have breakfast on her own, get dressed on her own, and then be ready and waiting for the school bus.

She’d pack her own backpack. And it’s like, you know, there’s probably not a lot of typical kids that do that as well as Jessica did. And I’m just so proud of the way she has. Embraced her responsibility and her desire to have a routine in a real positive way.

David Hirsch: That’s fabulous.

Skip Gianopulos: Yeah. You know, I would say Alison, just a huge heart, um, her wanting to get involved in the special needs ministry at church and to help out where she can, uh, just, just terrific. She is a very special kid and, um, I’m excited to see what, what she’ll wind up dedicating her talents to, um, well I would say with Cassidy, she has an energy level that, uh, we would all like to have, you know, she does not walk anywhere she runs. And, um. Does, does everything with gusto. I would say that, um, she taught herself how to swim.

So, um, we’ve, we’ve got a pool in the backyard and it has made our lives immensely, uh, less stressful now that she does know how to swim. And, um, you know, just seeing her and the joy she gets from that, it’s been a lot of fun.

David Hirsch: Well, one of the things I wanted to ask about because, uh, at least in the Hirsch household, when the kids turn 16, the expectation is they’re going to get their driver’s license.

So roll that back. And when they turned 15, literally on their 15th birthday, we’re going to the DMV. To get their learner’s permit. Right. So I don’t know how that impacts, uh, your family or if you’ve really been focused on, you know, the driving privilege issue. So,

Skip Gianopulos: Yeah, I would say that our 16 year old daughter, Stephanie, uh, there are days where, uh, she’ll come home and she’ll barely acknowledge my presence. She will storm right to her room. And, uh, you know, that might be the last we see of her for, uh, for a few hours anyways until she needs something or gets hungry. Right. So, uh. Contrasting that to our kids with special needs. Um, you know, Cassidy was still, uh, in fifth grade and is one to, um, you know, I could be sitting watching something on TV and she’ll come right up to the couch and cuddle up and, uh, you know, have a conversation with me.

So, I mean, it’s the kids with special needs, it’s just such a refreshing perspective to have. And when you think about it, even going forward, you know, how would it be going through life where, and this is, I would say typical of kids with down syndrome or people with down syndrome. You know, most, most people downs don’t care a whole lot about money.

They don’t care a whole lot about trying to impress you. They want you to be happy. They want to love you. And you know, those are, those are the important things for people with down syndrome. I would say typically, I realize I’m overgeneralizing, but you know, we can all learn a lot from that. We can all try to be more like that quite frankly.

And, um. Hoping a little bit of that rubs off on my 16 year old.

David Hirsch: So, um, I don’t have any teenagers anymore. Right. The youngest is 20. In fact she’s going to be 21. So we’re going to celebrate that in the typical fashion by getting together and going out for a drink

Skip Gianopulos: Her first glass of wine

David Hirsch: legally. Right.

But uh, what comes to mind though and just listening to you articulate the difference between having typical kids and non. Is that it probably has something to do with attitude, right. What I’m interpreting is that, you know, teenagers, just because they’re teenagers sort of have an attitude, right. And you know, their parents, you know, just don’t understand.

Right. You know, how could you possibly understand what’s going on in the 16 year olds mind, right? Yeah. You know what a dense person. You are. And we’ve all experienced that. Right. You know, as parents. Um, but what I hear you saying, I think I hear you saying is that your Down’s daughters don’t have that attitude, right?

Or do they have an attitude? Maybe you could explain that.

Skip Gianopulos: There are days when that attitude does come out and, and you know, my oldest daughter with down syndrome, Jessica, is a teenager and she does certainly have her moments. I’m not saying that those moments don’t exist, but they are, uh, you know, I’ll say much less frequent and they’re also very, uh, very much offset by times where, uh, you’re getting the opposite of the attitude. You’re getting, uh, the love and the, you know, just genuine happiness that comes out of her heart.

David Hirsch: Okay. Very cool. Yeah. So there’s another organization, I don’t know if the girls have been involved with Special Olympics, and I’m wondering if that’s played any role in your daughter’s development?

Skip Gianopulos: Yes. Are both of our special needs kids have been involved in Special Olympics and both of our typical kids, I’ve also been coaching. Surprise, surprise. And I would say that, um, so far anyways, we’ve had, um. A good success with the basketball and track and field program. Soccer has, has fallen a little flat on our family.

And, um, you know, both of those programs have been very helpful. We’ve got a coach in Barrington, coach Mark, who really has no connection with special needs. Was a very, uh, talented and accomplished basketball player in his own right. In fact, his wife played, uh, I believe, uh, college and I believe for the, uh, Olympics at one point, a US Olympic team, they have really embraced the Barrington Special Olympics basketball program. And that has made a. Huge difference. I can remember the first game that I saw, literally kids were holding hands, skipping down the court, having no clue what, you know, what, what to do in terms of, um, you know, strategy for the game or anything else. To the point where, uh, this last year our team won the state championship in the Special Olympics. Um, high school division.

David Hirsch: Yeah, that’s a fabulous story. So, uh, taking a step back, um, what are the most important takeaways that come to mind when you think about having not just one special needs child, but two special needs children?

Skip Gianopulos: Well, it’s important to surround yourself with people that, uh, I think, I think it’s important to surround yourself with people that have been there before.

So for us, we really didn’t have that kind of a network. We had to create it, uh, would have been terrific to be able to. Um, find a, find a network and to be able to kind of step into that a little bit more seamlessly, I will tell you, it’s a whole lot easier having your second kid with special needs. You know, the drill.

Um, you know, it’s, uh, what, what the road ahead looks like. And, um. I say that tongue in cheek, but you know, the voice of experience goes a long way to allaying some of the fears that you might have without, um, it’ll lay some of the fears that you would have in dealing with this in a vacuum.

David Hirsch: Okay. So, uh, why is it that you agreed to be part of the. Special Fathers Network and a mentor father.

Skip Gianopulos: Well, when, when very, uh, influential person in my life, David Hirsch had asked me, that was a key part of it, of course.But, um, I would say that the benefit of having the insight and the, uh, advice from somebody that has been down that road before, uh. I think that would be a very helpful thing.

I think I’ve learned a lot of things along the way that I, that would be beneficial to a new dad and, um, you know, look forward to being able to, uh, help share some of those things. Not to say that I’ve got all the right answers. I don’t. But, um, I certainly have some experiences that I think could be beneficial for a younger dad to, uh, to rely on.

David Hirsch: Yeah. Well, I really appreciate your willingness to, uh, be involved in the willingness to take a call from a young dad who has a child with downs or downs and autism for that matter.

Skip Gianopulos: Well, the one thing I will say, uh, is that there are days where our special needs kids are a whole lot easier than our typical kids.

David Hirsch: Really?

Skip Gianopulos: Yes. So, um, you know, it is really important to embrace the situation that you’re in. Um, I would say that as a, a good, you know, kind of ending note to say, uh, wherever you find yourself, be content in that and to find a way to draw out the positives and, and move forward.

David Hirsch: Yeah. That’s excellent. And just good advice for anybody in any circumstance, right. Deal with reality and move forward. The, hopefully the glass being half full. Yeah. Right.

Skip Gianopulos: Yeah.

David Hirsch: So, uh, Skip, thank you for your time and many insights. Um, as reminders Skip’s just one of. The dads who’s agreed to be part of the special fathers network as a mentor, father and mentor, a father with a special needs kids.

If you’d like to be a mentor father, or seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.

Skip Gianopulos: That was fabulous.

David Hirsch: Thank you for sharing.

Skip Gianopulos: Thanks for having me.

Tom Couch: The Special Father’s 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.

Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids. If you’re a father looking for support or if you’re a dad who’d like to offer support, go to 21stcenturydads.org that’s 21stcenturydads.org

David Hirsch: and thank you for listening to the Special Fathers Network podcast. Stories of fathers helping fathers.

Tom Couch: The Special Fathers Network podcast was produced for 21st Century Dads by Couch Audio, and again to find out more about the Special Fathers Network, go to 21stcenturydads.org.