023 – Joe Ciriano tells of becoming a widower and raising a special needs child solo.

Transcript:

Dad To Dad 23 – Joe Ciriano tells of becoming a widower and raising a special needs child solo.    

 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.

David Hirsch: Hi, I’m David Hirsch. This is the Special Fathers Network podcast, stories of fathers helping fathers.

Tom Couch: And I’m Tom Couch. Today David talks to special father Joe Ciriano.

Joe Ciriano: I feel strongly that God put all these people in our lives to help me through this, help us through this.

Tom Couch:  Joe and his late wife Joy were married for 21 years and had four children, including 14-year-old Grace who has Down syndrome.

Joe Ciriano: We never highlighted her special needs. She had no idea what Down syndrome was, or that she had Down syndrome, until probably a year ago.

Tom Couch: Joe’s had his challenges, and his life became even more challenging when he became an only parent after his wife Joy passed away in 2010 due to breast cancer.

Joe Ciriano: She was going to do everything within her power, which I think is true of most mothers, to not leave her kids alone, not die on them.

Tom Couch: Joe and six other fathers who had also lost their wives became a part of a support group. Their story is told in the book The Group by Donald L. Rosenstein and Justin M. Yopp.

Joe Ciriano: The book is really about re-imagining what life is going to be like.

Tom Couch: Joe is truly a special father, and we’ll hear his story on this Special Fathers Network podcast. Here’s David Hirsch.

David Hirsch: Being a father is very important to me. 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 with you.

Tom Couch: So let’s listen now to David Hirsch’s conversation with special father Joe Ciriano.

David Hirsch: I’m thrilled to be talking today with my friend Joe Ciriano of Burlington, North Carolina, a father of four, who works in the insurance industry. Joe, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Joe Ciriano: It’s my pleasure, David.

David Hirsch: You and your late wife Joy were married for 21 years and are the proud parents of four children, Ashley who’s 28, Emily, 25, Charles, 18, and Grace, 14, who has Down syndrome.

Let’s start with some background. Where did you grow up? Tell me something about your family, including your siblings.

Joe Ciriano: So I was born in Brooklyn, but moved down here to Durham, North Carolina when I was just a baby. My parents were both born and raised in Brooklyn, as was all of their extended family. I’m the oldest of three siblings, so my younger sister and brother were both born in North Carolina. They’re true natives.

We’re a very close knit family. We always have been, on both Joy’s side and my side. We have spent time together with our extended families. Even eight years after her passing, we still spend holidays in the summer at a lake house with them.

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

Joe Ciriano: I guess first off, I felt like he always had high expectations for me. I would have to say one of the pieces of advice that he gave me as I got older—I was probably in high school or college—he would tell me time and time again, “Don’t talk just to hear yourself talk. If you don’t have anything to contribute to the conversation, just listen, and people will pay attention to what you say. If you get a reputation for being the person who sits back, listens, tries taking the information, then if you’ve got something constructive to add, people will pay attention.”

And I think that’s true. I try to practice it. I tell my kids all the time that God gave you two ears and one mouth, you should use them in that ratio.

David Hirsch: That’s really good advice to follow. Not easy at times.

Joe Ciriano: No, it’s not, but really good advice.

David Hirsch: So you went to NC State University, you have a BS in computer science, and you went to the University of Illinois, one of my alma maters, where you took a master’s degree in computer science. When you graduated, what were you thinking? What was your vision for your career?

Joe Ciriano: I wasn’t sure what I wanted to do. I just wanted to get out and start working and making some money, as a 22-year-old probably always does, buy a new car and those kinds of things.

My career has been very varied over the years. I started out as a programmer, which I loved doing, and I did that for a while. Then I migrated into internal audit back when I was with AT&T. And then I had a consulting company for about nine years doing network infrastructure stuff. Then I worked for Lab Corp for a few years, running all of their infrastructure.

And lo and behold, I ended up getting laid off at Lab Corp. I’m very much in business, very relationship oriented. So one of my relationships that I worked with at Lab Corp said, “Hey, let me introduce you to this guy. I think you guys will hit it off. With you looking for work, they may have some opportunity for you.”

So she did that. We met, and after that I did sales and account management there for almost ten years. So I guess you do tend to kind of follow in some of the things your dad did.

David Hirsch: Very interesting. So I’m wondering, where did you meet Joy along the way?

Joe Ciriano: So, Joy and I were college sweethearts. She was two years younger than me. I was at NC State. She was actually at an all girls school in Raleigh. A couple of my fraternity brothers knew her because they were from the same place where their lake house was. So they had known her over the summers. She used to move down there with her mom who was a teacher during the summers.

So we were friends for a while, and then we started dating, I guess that was probably my junior year, about a year after we had met. And we hit it off well.

David Hirsch: Well, were you married shortly after college, or when did you get married?

Joe Ciriano: It was about four years after college, after I graduated. She went to law school straight out of college, and we got married after her second year of law school.

David Hirsch: Okay. So let’s talk about special needs on a personal level, and then beyond. What was your connection to the special needs community prior to starting your own family?

Joe Ciriano: There really wasn’t a whole lot of connection. Joy and I both had volunteered for the Special Olympics while the games were going on locally. And I believe she actually served on the board of our local ARC. So she had a little bit more familiarity with the community than I did.

David Hirsch: So you actually had some connections to the special needs community before Grace was born.

Joe Ciriano: Yeah, we did.

David Hirsch: Okay. So what was your first reaction upon learning about Grace’s diagnosis? I recall you mentioned it was before she was actually born.

Joe Ciriano: Correct. So Joy was 39 when she was born, just following the standard of care her doctor had recommended. We did the Apolipoprotein test, and it came back and said there’s a chance there may be some genetic disorders. So he recommended doing amnio to see.

We went back and forth, I mean for days, looking at the risk of doing amnio? And I think it was at that time one in 200 people ended up aborting the pregnancy when that happened. So we went back and forth. And the reason for that was we wanted to know one way or the other.

It wasn’t going to influence our decision about what we did with the pregnancy. But both of us felt like, well, if there’s a chance that we’re going to end up with a special needs child, we may as well be preparing for it now, and see what resources are out there and what we need to do.

So I distinctly remember getting a phone call from her when the results came back in, because I was on an overnight field trip with my son. It was just kind of a wave of, “Oh, my gosh, what am I going to do? How am I going to deal with this?” And all of these different thoughts flooding in. “Can I handle this? Why has God put this in my life? Is there a reason for it?”

I’m sure with anybody there is that element of just being overwhelmed with what’s coming, and truly you to go through what, for lack of a better term, a mourning of not having this child that’s exactly like all of your other ones, right? So you have to kind of grieve that loss so that you can embrace what you do have. That was the route we took.

And it was interesting because her Ob Gyn, who delivered all three of our other kids, we really liked him. He was super. It was a very interesting reaction, because when we found out that she had Down syndrome, his immediate response was, “Well, I’ll schedule a D&C for you.” And we kind of looked at each other and said, “What did he just say?” We said, “No, we have no intention of terminating this pregnancy.”

So there were several visits after that, where he had made the same recommendation. And today, if I’d done that, I don’t know how I would have lived with myself. And knowing what I would have missed out on, it would have been a tragedy.

David Hirsch: Yeah. Well, I wonder if it’s the way it used to be in the medical community. It’s different today than it was 14 years ago when Grace was born, and it was even different if you go back 30 years or 40 years. They didn’t even refer to kids with Down syndrome as Down syndrome. How they referred to them was Mongoloid. So we’ve come a long, long way in the last a generation or two.

And I’m so pleased to hear that the decision to do the testing was just really more of a FYI, so you know what to expect, as opposed to like, I think too many people do, which is to make a decision, a life or death decision.

And I don’t want to step on any landmines, but there’s this situation in Iceland where Iceland has been proclaiming that they’ve eliminated Down syndrome from their society, like that’s a medical breakthrough.

But it’s not a medical breakthrough. All they do is they insist on all the women who are pregnant have these tests. And if you’re going to have a Down’s child, they require that you terminate the pregnancy. Which is insane, that that sort of philosophy exists on a countrywide basis. So it’s alarming when I hear about these situations.

But what advice did you get early on after Grace was born that helped put a this new direction into perspective?

Joe Ciriano: We were pretty fortunate even before she was born, in that one of our best friends, who happened to be our next door neighbor, worked with an organization, a nonprofit in town, that dealt with the care of developmentally disabled adults. So it wasn’t quite the same thing, but she had a special education background.

She’d been working with them for years and. One of the first things she said when she found out was, “You’re going to love this child. This child is really going to demonstrate to you what unconditional love is.” And she said, “My recommendation to you is that you guys learned basic sign language.”

And of course, I’m kind of sitting there thinking, “I’m going to do sign language to the baby?” And so we start doing some of the reading on it, and she was fluent in American sign language. So she actually taught us some stuff. And that was extremely helpful. Grace was able to communicate at six months old, seven months old, telling us that she wanted more food or more milk or whatever it was.

David Hirsch: What were some of the more important decisions you and Joy made raising four children, including one with special needs?

Joe Ciriano: I think school’s always presented somewhat of a challenge. My older three went to Catholic grade school and middle school. With Grace, Joy did a lot of research. So for her preschool years, we put her in what was called Alamance Developmental Center at that time. They worked with a lot of special needs kids. They also happened to be the only five star rated daycare in town.

But they also had probably an equal population of mainstream kids. So you kind of got the best of both worlds. They could give you some advice on dealing with some of the special needs issues.

One of the other things is Joy and I are both firm believers that kids raise or lower themselves to your expectations as parents and as teachers. Because of that, we made a conscious decision and effort to treat Grace like we treated all of our other kids. We never highlighted her special needs. She had no idea what Down syndrome was or that she had Down syndrome until probably a year and a half ago.

I had a conversation with her, because she was talking about wanting to drive. So I had to explain that there may be some limitations to what she could do, and this is why. Now, she still doesn’t really see herself as any different from anybody else. From the time she was born, just like all the other kids in the family, she was expected—not since she was born, but once she could walk—she was expected to take her plate, put it in the dishwasher, and do some chores around the house. So while we adjusted what she was doing to be appropriate for her, she still had those same expectations.

So if I’m expecting Charles to take out the trash, well, Grace, I want you to vacuum or something, whatever the situation was. And I think part of that expectation has helped her maintain pretty high self esteem. She’s very outgoing. She loves to be around people.

 David Hirsch: Well, that’s a remarkable story. Thanks for sharing. And if I could paraphrase what you said, Grace didn’t go to Catholic school like the others. There was a different path for her, and it worked out, sort of a best of both worlds, being with typical kids and other kids that were of some type of special needs.

And the fact that she didn’t really have this sort of label put on her like so many kids do allowed her just to develop and grow, and holding her to the same high standards or expectations as your other kids. That’s been part of your secret.

Joe Ciriano: And she did actually go to the Catholic school.

David Hirsch: Oh, she did. Okay.

Joe Ciriano: For about three years. Part of the reason was it was a small school, and we knew they would embrace her. And we felt like it was important for her to have that connection, to kind of feel that loving environment, where we know that nobody there would pick on her because she’s different. And if that were to happen, then everybody on the faculty and staff would step in and say, “This is not how we treat people.”

David Hirsch: I love it. So, I’m thinking about different challenges that you’ve faced. And I’d like to break it up into three segments if it’s appropriate: prior to Joy’s diagnosis, which I recall was in 2005, during Joy’s treatment, and then subsequent to her passing.

So the two of you were able to advocate for Grace and make these decisions jointly. I’m wondering what were some of the challenges once Joy was diagnosed and she was going through these treatments?

Joe Ciriano: Prior to her diagnosis, the biggest challenges were logistics. We’ve got three kids that were very active. So, someone’s got volleyball, somebody got gymnastics, someone’s got basketball. So a lot of it was around logistics. I mean, just having four kids takes a lot. It takes a lot to get everybody where they need to be. One of the bigger challenges was just the logistics.

We were happy with the school that they were in. We liked the environment, and we did all of that. So if you fast forward that to her diagnosis in 2005, she went through a lot that year. We went through five surgeries in a nine month period.

David Hirsch: Wow.

Joe Ciriano: It was just a lot to handle, especially for younger kids to come home and see mom kind of incapacitated. She did the five surgeries, she did chemo, and then she did radiation. And in between chemo and radiation, she insisted that we move. So we bought a house that she just really loved and said, “No, we should do this now.” So in the middle of that, we also moved.

So as far as what the kids were impacted by all of this, what it came down to is we basically set a new normal. Okay, Mom is going to be doing a clinical trial up in Boston. She has to travel up there every three weeks for four days or three days. So this is our new normal, our new reality. And she did that for almost two years, I guess it was, after she had a recurrence in 2007.

And the kids needed information at different levels. You had one that was in high school, and the other one was middle school and then high school. And then Charles was young. He was only five when she was diagnosed. And Grace was of course two. So they needed information at different levels.

And I always tried to be open and honest with them about what was going on. I tended not to get into a lot of detail. If they were curious or they wanted to know about something, I would not keep it from them. I would tell them, but in my mind I said, “This is the information I think they need to be able to process and deal with it.”

It was kind of a give and take. If they were asking questions, then we would sit down and talk about it. But we were not by any means hiding information or keeping information from them. So she was sick for five years. After that nine month period where she went through all those surgeries, they had declared her cancer free.

So we were able to do a lot of the things that normal families do. We could travel and go on vacation, and she could drive. She went back to work. But once she had her recurrence or relapse, we never knew exactly what was going to be coming down the road.

I remember going on vacation to the beach with my sister’s family and another family. And she was just kind of struggling, catching her breath the whole time. So we took her in, and they immediately hospitalized her for about a week when we got back.

So here we are again—this is a new normal. Mom can’t make these longer journeys. It takes too much out of her. But I told you before, she was a fighter, and she was going to do everything within her power, which I think is true of most mothers, to not leave her kids alone, not die on them. That was her motivating factor. And she was always saying, “So this isn’t working. What’s the next thing, what can we do?” Up to probably a week before she died she was doing that.

David Hirsch: Wow. Well, it sounds like she put in about as good a fight on as anybody could in her will to live. It was beyond the typical situation, given the fact that you have four kids and all the other things you have going on.

And I’m wondering, when you were making that transition, what was the challenge like, once she passed? All of a sudden you’re a single dad and only parent.

Joe Ciriano: Oh, that was…there was so many. She and I very much co-parented, and we were both pretty passionate people. We by no means had a perfect marriage, but it was a good marriage. We would argue all the time. I mean, relationships are work, and it’s about compromise. But if there was a particular parenting issue that we were on opposite sides, we would talk it out until we said, “Okay, this is what we’re going to do.”

And we just had a r9le at whoever solution we were following, the other one would not be going, “Well, that’s because that’s what your mom wanted to do.” So we were behind it. As far as the kids were concerned, it was one decision. There was no variation with it.

So one of the things, when you lose a spouse is you lose that check and balance, right? You have a rough day at work. And you kind of take it out on the kids. Well, the other spouse is there to say, “Hey, you know what? I got this one. Just have a glass of wine. Just take a breath. Clearly you’re frustrated from what’s going on during the day.” So losing that check and balance.

I often tell people that there’s a very large distinction between being a single parent and being an only parent. Because if you’re a single parent because of divorce, not everybody, but by and large, there’s usually some form of co-parenting that’s still going on, and you get a break, right? If there’s a visitation schedule, if it’s every other weekend, that’s two days where you’ve got time to just do what needs to be done. And as an only parent, if you don’t have that. You’re on 24/7, and it’s hard to stay caught up with stuff.

And for me, one of the most humbling things was really asking for help. I was not a person that wanted to ask for help. But it just got to a point before she died that we had people lined up, whether it was from the church or from the school or just from the community. I took her to Boston the first time she went for her treatments, and for the next 20 months there were people who were volunteering to take her up there and stay with her for three or four days.

David Hirsch: Wow. That’s impressive.

Joe Ciriano: So it was a very close knit community. Some of it was because she was extremely active in the community, always being sought to be on boards. And being a female attorney in a smaller town kind of put her up where people were really trying to seek her out for advice, and to participate on boards. And she loved doing it, you know?

She was a people person, so it was a reflection of that. And our school community…we had people bringing meals for the last two and a half years that she was sick.They were bringing us meals three times a week, which was a tremendous, tremendous help, especially when she was traveling. She didn’t cook much anyways. I always did most of the cooking. But it’s hard when you’ve got to do everything else to get motivated to cook and clean and do those kind of things.

David Hirsch: You don’t want to become a fast food family. Right?

Joe Ciriano: Exactly. And one of the other challenges…when you think about it, it doesn’t seem like it’s that big of a deal, but it really was. Once she was gone, I basically had to pick and choose what activities I was going to go to with the kids, right? Whether it was soccer or basketball, when you’ve got conflicting things, you can’t be everywhere. One or both of us were at probably 90% of our kids’ games before she passed away. And then you’ve got to sit there and say, “I can’t do this.”

David Hirsch: Yeah, well adapting, like you’ve had to, required you to do different things and you were already in zone defense. There’s four of them and two of you and all of a sudden, you’re down to four on one, and your approach has to change, right? You can’t do the things that you were able to do when it was four on two.

And I don’t mean to make it sound as basic or as simple as that, but the reality is there’s going to be some give and take. And it sounds like you did the best job you could in the circumstances, and everybody had to make the adjustment. It wasn’t just you. Everybody’s expectations are shifting a little bit.

Joe Ciriano: Exactly. Exactly.

David Hirsch: So what impact has Grace’s situation had on Ashley, Emily and Charles, as well as the rest of your family?

Joe Ciriano: So one of the things that really stands out to me was when Charles was in middle school, and he’s five years ahead of Grace, they were having a problem with Grace at school. So when she was upset about something, and they we couldn’t get her to stop crying. Whatever the situation was, they would call him, and he’d go down to the classroom. He was good at calming her down. But that’s a challenge. Again, that’s one of those things that shouldn’t be put on a 12 year old to do, but he was able to do it. I think he very willingly wanted to help out and do that.

Some of the other challenges of dealing with special needs is learning patience. And we all have to work on that and try to improve that. As you’re well aware, oftentimes patience is a derivative of how your day went.

As delightful as she can be, as you’re well aware, kids with Down syndrome can be a handful to deal with, because they’re stubborn. And unfortunately in my family, stubbornness runs always up the tree. So that’s been a challenge for me.

I think they are all very cognizant of the issues that a developmentally disabled person faces on a daily basis. They see if she doesn’t get invited to this person’s birthday party that she just kind kinda has considered this person as a friend. But whether it’s because they only invited two or three people, or whatever the reason was for not including her, they’ve seen that. And I think for them, it has made them even more compassionate and considerate, to think about just in general how your actions are going to impact the people around you now.

David Hirsch: That’s great. What does Emily do now?

Joe Ciriano: Emily works for Amazon. She was a supply chain major in school. So she’s been with them for four years now, and she is actually pregnant. So she’s due September. Which is exciting for all of us.

David Hirsch: So that’d be your first grandchild.

Joe Ciriano: That will be the first.

David Hirsch: Wow. Congratulations. That’s exciting.

Joe Ciriano: It is. It is definitely exciting. I wasn’t ready for the moniker of grandpa when they told me. So we decided I’m going to be Papa Joe.

David Hirsch: Well, I’m confident with all the changes that you’ve been able to adapt to, this is one that you’re going to adapt to and be really good at. I predict really good at.

Joe Ciriano: Thank you

David Hirsch:, So I want to give a shout out to Justin Yopp, this child psychologist at UNC Lineberger Cancer Center. Because it was prior to Joy’s death that you met, and you communicated with him. Recall that situation or story for me.

Joe Ciriano: I remember it quite vividly. It was in January about, I want to say two weeks before she died, we had just had a big snow storm. Chapel Hill was….

David Hirsch: Wait a second. When you say big snowstorm, this is North Carolina.

Joe Ciriano: By North Carolina standards, this was big for us. I mean, we normally get three or four inches. This was more like eight or nine inches.

David Hirsch: Okay. So it was legitimately a snow storm,

Joe Ciriano: A lot of ice too. That’s what we do instead of snow. So we were in the hospital. I had friends that were driving the kids back and forth to see her at the hospital. The doctor had actually come in and said, “We think there’s something on her spinal cord. She’s probably only got like 48 hours to live.”

David Hirsch: Oh my God.

Joe Ciriano: And for me, I was just flabbergasted by that, because that’s not the new norm at that point. And as it turned out, they were wrong. She didn’t have the condition they thought she had.

David Hirsch: Oh my gosh.

Joe Ciriano: But you know what? When somebody’s giving you a deadline here, do this. And he had come in, introduced himself, and said, “Is there anything I can do?” And I asked him for advice on how the talk to the kids about this, where we are, what we need to do. And this was probably about a month before she passed. So he gave me some very helpful advice, and it was really, as I think about it, it’s something that all parents should do.

And that was for her to write letters to them after she’s gone, what she’s proud of, what her fears are for them. And that is something that I encourage parents to do, regardless of your health, because you never know when it’s going to go away. So if you write letters to your kids, if you’re really good at this—which I’m not a great author—you write a letter that says, “On your high school graduation, and your college graduation, on your wedding day, this is what I want you to remember.” So that was the advice from Justin. It was very helpful.

He and I have hit it off since then. As you’re aware, when we started this group, this was the summer after Joy died. He had called me and said, “We’re trying to find a place to refer fathers that are in this situation. We can’t find anything anywhere. Would you be willing to come in and sit with us and talk and plan out how we could do a support group for these people?”

David Hirsch: So you were one of the first dads that was involved in what turns out to be The Group. And from what I recall, I don’t know if I read this or you told me, or he told me, but the expectations to begin with was maybe that you guys would meet six times. And that wasn’t how it transpired at all.

Joe Ciriano: No, not in the least. We had come up with this really nice neat plan. We’re going to meet six, maybe eight times. We’ll have either Justin or on Rosenstein, who’s a psychiatrist there at the cancer center, give a talk on some topic related to grief.

In October, we had our first meeting, and there were seven or eight of us that came to the meeting. It was the worst, most gut-wrenching thing you’ve ever seen, because what are we going to do? Well, we’re going to introduce ourselves. So they want us to introduce ourselves and tell a little bit about your story and what you were dealing with.

David Hirsch: Oh my God.

Joe Ciriano: You know, not only are you sitting there having to do that, but every time somebody tells us part of their story, you’re reliving all of this stuff. And Don has said it many times. After that first meeting, I turned to Justin. I said, “This was a great idea, but I don’t think anybody’s coming back.”

David Hirsch: It sounded like it would be a very painful experience, to relive that in a group setting, and everybody’s telling their pain wrenching story. There was something going on there though. I don’t know what it was, but there was something going on that you guys must have bonded in a way that you wouldn’t know otherwise.

Joe Ciriano: No, that’s absolutely true. I chatted with Justin about it. The group became almost self facilitating. So while Don and Justin were the official facilitators there, they were the “experts,” they’ll tell you, “Well, there’s no research. So we can’t really be experts in this.” And most of the time, if somebody would say, “What do you guys think?” they would go, “You guys are living it. What do you think?” And it was such a great interaction. It really got to the point where people would walk in, and they’d sit down, and nothing was off the table. They would go, “I’m having to deal with this.” 

Me, as a single father, having to deal with puberty with a developmentally disabled child. And both my older girls were gone. That was a challenge. That was a huge challenge and a fear from my perspective. So it served to kind of help you stem the tide a little bit, where, “Okay. I know all the things I’m not doing.” You don’t give yourself credit for the things that you do actually get accomplished.

And it was pretty amazing with the group. We would call each other out. The questions and the criticism was taken as being constructive, because it’s come from somebody who is in your situation, living it day in and day out.

David Hirsch: Yeah. Well, it’s really, truly a peer to peer network. Not people that are professionals trying to help you, but just guys relating from one man to the next, or one dad to the next, what you’re experiencing. And there’s probably no better people to be in contact with. But it didn’t last for six sessions. How long does this actually go on?

Joe Ciriano: So it went on for just about four years.

David Hirsch: Oh my gosh. So how often would you actually meet then?

Joe Ciriano: We met monthly.

David Hirsch: Monthly for four years. Wow.

Joe Ciriano: From the time we started, we met monthly for four years. And to Don and Justin’s credit, they had student athletes at Chapel Hill volunteer to come in and keep the kids, watch the kids, play games with the kids. They provided dinner for us, whether it was subs or pizza or whatever. And they would always provide pizza for the kids. And the kids would have a blast. Because they didn’t want childcare to be an impediment to people coming to this and getting what they need out of the group.

David Hirsch: That’s fabulous. So when did it go from being a group therapy session for single fathers due to losing a spouse through cancer, to the study or the book that actually came out?

Joe Ciriano: The book was kind of a culmination of a lot of different things. To a person in that group, the guys all kept saying to Don and Justin, “What can we do? How can we help the situation?” If you go to the website, one of the things they did was they wrote a grant to get a videographer to come in. And they basically put us in front of a green screen and asked all seven of us the same ten questions.

Each of us answered it. They took it back. They spliced it into little vignettes. So you would hear two or three of us speak on each topic. Very short. And it was a wide range from dating to what was your biggest failure as a new single dad? It was almost comical, because we had so many of those.

Group members:

Hi, I’m Joe Ciriano. My wife Joy was diagnosed January of 2005 with breast cancer.

I’m Bruce Ham. My wife got sick in September of 2009. Six months later, she passed away.

I’m Steve Steuben. At the time we had two children ages two and four, and to complicate matters, we were also expecting a third.

I am Dan Pelletier. During her sickness, all of our strength and energy was focused on her and her trying to get better. And obviously that did not happen.

I’m Carlo. And I woke up a few days later after everybody left with a 12-year-old and a nine-year-old and no clue what to do.

My name is Neil Gott. I tell everybody this group absolutely saved my life.

There’s life after loss. And I think one of the things that a person going through this has to do is to give oneself permission, if you’re feeling lousy, to say that’s okay. If you’re grieving, give yourself permission to grieve.

You will screw up, and you need to be able to laugh about it.

My advice would be to go easy on yourself. I think being an only parent is very difficult. There’s just a lot of pressure to get it right for the sake of your kids. And I wasn’t able to always get it right.

Don’t be afraid to ask for help. None of us are really support group guys. And yet we all found ourselves here, and we all benefited from it.

David Hirsch: So what role has spirituality played in your life?

Joe Ciriano: It’s been a big deal. I’ve always been a believer that things happen for a reason. And when we found out Grace’s diagnosis, somebody shared with me, “God, won’t give you anything you can’t do.” But you got to believe that, right? For me, I mean, I’ve always gone to church, done the “appropriate” things that you do, but it wasn’t until Grace’s diagnosis and then Joy’s diagnosis that I really began to take solace in the church.

Just being there, sitting through mass, it gave me comfort. I feel strongly that God put all these people in our lives to help me through this, help us through this. I mean, when you’ve been through what we went through…and in the middle of all this, I lost my job and was out of work for like nine or ten months.

David Hirsch: Wow.

Joe Ciriano: So when you go through this, a Down syndrome diagnosis, a wife diagnosed with cancer, all of these surgeries, losing your job, you just keep naming them. And I honestly would tell people that I still feel like I’ve been blessed.

David Hirsch: That’s remarkable. And it sounds like your support networks are multi-layered. It’s not just your church family, the people within your church, but it’s the health care providers really embraced you. And then your non-church fronts, the broader community, really wrapped their arms around you and your family. And it really teaches you what’s important.

Joe Ciriano: Exactly.

David Hirsch: How people react to adversity, you directly, and then this friend group, the support group, indirectly. People just step up. It’s like divine intervention. I don’t even know how you’d describe it. And it’s very powerful to know that you’re embraced, and that you’re loved, and that you’re going to be okay. You don’t know how, but you’re going to be okay.

Joe Ciriano: And for people who might read the book, it’s kind of rooted in our stories as these seven widowed fathers. But the book is really…I mean, this is why they put this in the title. It’s about re-imagining what life is going to be like. If you can’t imagine that, then you can’t move forward.

That’s roughly the same thing I said about wanting to get Grace’s diagnosis or wanting to do the amnio while Joy’s pregnant, because you’re not going to have what you thought you were going to have with this child. That doesn’t mean you’re not gonna have something special, but you’re not going to have…you’ve got to get past that.

And for the seven of us, we were in the beginning just getting by. We were dropping the ball, missing stuff, doing all kinds of stupid things. And, I mean, it changes, and that’s something that you can see in the book. You can see how some of our outlooks changed.

We laughed about a lot of stuff, which was good. One of Bruce’s favorite lines—he was kind of the comedian in the group—he would sit there, and he would say, “Yeah, when I compare myself to all these other moms, I really feel like I’m dropping the ball. But when I compare myself to you guys, I’m okay. I’m not doing so bad.”

David Hirsch: That’s fabulous. And it is a perspective. It’s an important perspective, what you are using as a measuring stick.

Joe Ciriano: Exactly.

David Hirsch: So I’m thinking about advice, and this has more to do with raising a child with special needs, but what are some of the more important takeaways that come to mind when you’re raising a child with differences?

Joe Ciriano: I think number one is to make sure that you push the child, that you have high expectations. It doesn’t mean you’re not going to adjust your expectations to be appropriate, but why not start off with the bar high? If you start off with it low, where are you going to go? What’s that child going to learn? That is one of the most critical pieces of it.

The other thing is, and I was not very good about this, is be willing to seek out some help. I never went to a Down syndrome support group. I had no interest in going. I probably would not have gone to this widowed fathers group if Don and Justin hadn’t asked me to come in and help. If they had just called and said, “Hey, we’re going to start this. Do you want to come?” I probably would have said, “Well, it sounds nice, but I don’t really feel like I’m a support group kind of guy, you know?”

And the other thing is to try and use your resources. There’s stuff out there. Sometimes it’s harder to find for Down syndrome. I recently discovered Gigi’s Playhouse because it’s around the corner from where I work, which happens to be about an hour from where we live.

So they are…you’re very familiar with them, a center that promotes Down syndrome. And they do fun stuff with the kids. They do developmental stuff with them. They do it for adults. And the biggest thing I think is they can help people find some of those other resources that might be out there.

David Hirsch: Yeah. Well, it’s an amazing organization. I think I might’ve mentioned to you that Nancy and Paul Gianni, Gigi’s parents, are literally neighbors, fellow parishioners at St. Anne’s Church in Barrington, where we live. And their oldest, Franco, and our youngest, Addie, were classmates, K through eight.

And so we’re like at the Gigi’s Playhouse epicenter. It started out with very humble beginnings, a dozen years ago, now there are 36 Playhouses around the country and one in Mexico. And there are applications and inquiries for 200 more of these. What an amazing resource it is for all families that are touched by Down syndrome.

And I’m so glad or thankful that there’s one that’s nearby that you can tap into even at Grace’s age. There’s amazing resources there.

Joe Ciriano: Yes. Very much so.

David Hirsch: Good advice. So, why did you agree to be a mentor father as part of the Special Fathers Network?

Joe Ciriano: Well, for much the same reason that I agree to do a lot of these things in public, about the book, about the group. Number one, both Joy and I have always tried to instill in our kids that it’s important to give to the community. And however much of a pain in the neck it seems at the time, because you’re not able to go play golf or go do this, because you have these commitments, we tell them all the time it pays back in spades. I mean, it’s incredible.

So we’ve gotten responses to the book and the website, hundreds of emails from people that have said that this has helped them. And that alone is very cathartic, to feel like you can do that. And so with your program here, with 21st Century Dads, if you can do something to ease somebody’s burden just a little bit, then I can’t imagine why you wouldn’t do that.

David Hirsch: Yeah, well, it’s very important, like you emphasized, not just to be good role models to our kids, but what goes around comes around. Most of the dads say that one of the reasons that they’ve stepped up is that they wish there was somebody else they could have talked to that first year, the first couple or three years after they found out about their situation.

I just want to say thank you for doing that. Is there anything else you’d like to say before we wrap up?

Joe Ciriano: No, I think I’ve spewed plenty. I would like to say, I think it’s great that you’ve gotten behind this cause and recognized a need that was out there and give your time to do this. I’m sure it’s very time consuming, having to track down people and get them interested, number one, and then number two, all the follow-up that comes from it. So, I’d like to thank you for that and for the opportunity to be here with you.

David Hirsch: Yeah, well, we’re members of the mutual admiration society then. If somebody wants to get a copy of the book, The Group: Seven Widowed Fathers Reimagine Life, view the video, or contact you, how would they go about doing that?

Joe Ciriano: So, probably the easiest way is just to go to the website. It’s called widowedparent.org. I think they do have that film up there. But if you go to that site, it’s got some excellent resources.

But also one of the header says “The Book,” and it’s got information on how to order it. You can get it from Amazon. They’ve sold out of it a couple of times. I think they’re even talking about doing another reprinting of it. The easiest way to do that would be just to go to the website and you can submit something. If you want to get up with me, if you submit something there, Don or Justin will call me in and pass along the information.

David Hirsch: That’s great. So, Joe, thank you for taking the time and many insights. As a reminder, Joe has just one of the dads who’s agreed to be a mentor father as 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 a mentor father with a similar situation, your own, please go to 21st century dads.org.

Thanks again, Joe.

Joe Ciriano: It’s my pleasure.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar 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. 

David Hirsch: And thank you for listening to this Special Father’s Network podcast, stories of fathers helping fathers.

Tom Couch: The Special Fathers Network podcast was produced for 21st Century Dads by Couch Audio.