Host David Hirsch talks to Special Father, Joe Ciriano. Joe and his late wife, Joy were married for 21 years and had four children. Ashley, 28, Emily, 25, Charles,18 and 14-year-old Grace who has Down Syndrome.
Joe has had his challenges and his life became even more challenging when he became an only parent after his wife Joy passed away in 2009, due to breast cancer.
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 J Rosenstein and Justin Yopp.
Joe is truly a special father and we’ll hear his story on this Special Father’s network Podcast.
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. That’s 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, Ashley 28 and Molly 25, Charles 18 and 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,
Joe Ciriano: Joy passed away in 2010 due to breast cancer, she was going to do everything within her power, which I think is true of most mothers, too. Not leave her kids alone, you know, 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 J Rosenstein and Justin yacht book is really it’s about re-imagining what life is going to be like. Joe is truly a special father and we’ll hear his story on this Special Father’s 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 Father’s Network.
Joe Ciriano: It’s my pleasure, David.
David Hirsch: You and your late wife, joy were married for 21 years and other, the proud parents of four children, Ashley who’s 28 and 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 two, my younger sister and brother were both born in North Carolina. They’re true natives.
You know, we’re, we’re a very close knit family. We always have been, we’ve always on both joy side. And my side gotten together, spent time with extended family to this day, even at years after her passing, uh, 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: So I guess first off, I felt like he always had. High expectations for me, I would have to say one of the things, the pieces of advice that he gave me as I got older, I was, I was probably in high school or college and he would tell me time and time again. He would say, 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. You get a reputation for being the person who sits back, listens, tries taking the information. And then if they’ve got something constructive to add, puts it in, people 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
David Hirsch: advice to. 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 mater SCO alumni, uh, 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, 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, very varied over the years. I’m I started out as a programmer, which I love doing, and I did that for a while, you know, migrated into internal audit back when I was with at and T. And then I had a consulting company for about nine years to a network. Infrastructure stuff. Then I worked for, 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 and you looking for work, so they may have some opportunity for you.
So she did that. We met, and after that I did sales and account management for almost 10 years. So I guess you do tend to kind of follow in some of the things that your dad did.
David Hirsch: Very interesting. So I’m wondering, where did you meet joy along the way?
Joe Ciriano: So, Joe and I were college sweethearts, um, She was two years younger than me.
I was at NC state. She was actually at a 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 summer. She used to move down there with her mom who was a teacher during the summers. So we were friends.
For awhile. And then we started started dating, I guess that was probably my junior year. About a year after we had met, we hit it off. Well,
David Hirsch: were you married shortly after college or when did you get married?
Joe Ciriano: It was about four years after college. I would, yeah, four years after I graduated. So 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 was a whole, whole lot of connection I had joined. I both had volunteered for special Olympics while the games were going on locally.
And I believe she served 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 he actually had some connections to the special needs community before grace was born.
Joe Ciriano: Yeah, we did. Okay.
David Hirsch: 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. And just following the standard of care that our doctor had recommended. We did it, the Apple fetoprotein test came back and it said, well, you know, there’s a chance there may be some genetic disorders. So he recommended doing amnio to see, and we went back and forth.
I mean for days looking at, you know, what, what is the risk of doing amnio one? And I think it was at that time, 200 people ended up boarding 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’ve got, we’re going to end up with a special needs child. We may as well be preparing for it now and, 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 second one.
It was, it was just kind of a wave of. Oh, my gosh, what’s what’s what am I going to do? How am I going to deal with this? And all of these different thoughts flooding in, you know, can I handle this? Why has God put this in my life? Is there a reason for it? I’m sure. I’m sure with anybody there, there is that element of just being overwhelmed, you know, with, with what’s coming and, and truly you have, you have to go through.
Uh, what, for lack of a better term, a morning 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, when we loved, he delivered all three of our other kids.
So, you know, w we really liked him. He was, he was super, it was a very interesting reaction because he was, when we found out that she had down syndrome, who his immediate response was, well, I’ll schedule a DNC for you. And we kind of looked at each other and said, what did he just say? You know, 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 you know, today, if I’d done that, I don’t know a, how I would have lived with myself, but knowing what I would have missed out on a, it would have been a tragedy.
David Hirsch: Yeah. Well, I, I wonder if it’s, um, the way it used to be, uh, the medical community was it’s different today than it was 14 years ago when Chris was born and it was even different.
If you go back, you know, 30 years
Joe Ciriano: or 40
David Hirsch: years, you know, they didn’t even refer to kinda the town syndrome as down syndrome. How they refer to him as Mongoloid.
Joe Ciriano: Right?
David Hirsch: Right. 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, uh, you know, there’s this situation in Iceland where Iceland has been proclaiming that they’ve eliminated down syndrome from their society, Michael, wow, 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 that, you know, they require that you terminate. Pregnancy, which is insane, right. That sort of philosophy exists in all manana like a statewide 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, in that one of our, 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 him for years and. One of the, one of the first things she said when she found out is 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, you know, 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 it six months old, seven months old telling us that she wanted more food or more mill or whatever, whatever it was.
David Hirsch: What were some of the more important decisions you enjoy made raising four children, including one with special needs?
Joe Ciriano: I think school’s always presented somewhat of a challenge. Um, my older three, I went to Catholic grade school and middle school with grace. You know, joy did a lot of research. So for her preschool years, we put her in it’s called Alamance developmental center.
At that time, they worked with a lot of special needs kids. They also happen 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 that were used to dealing. They could give you some advice on, on dealing with some of the special needs issues.
One of the other things is join are both from believers. The kids raise lower themselves to your expectations as parents and as teachers, because of that, we, 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 ago, I guess it was maybe a year and a half ago. I had a conversation with her because she was talking about wanting to drive and, you know, so I had to explain that there may be some things, some limitations to what you can 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 Tom. She was born, but once she could walk, she was expected to take her plate clear plate, you know, 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, you know, whatever the situation was. And I, I think part of that expectation has helped her maintain pretty high self esteem. She’s, you know, she’s very outgoing. She loves to be around people.
David Hirsch: Yeah, well, that’s a remarkable story. Thanks for sharing. Um, and if I could paraphrase what you said, uh, grace didn’t go to Catholic school. Like the others, there was a different path for her and it worked out, you know, 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, you know, she didn’t really, you know, have this sort of label put on her. Um, Like somebody’s kids do, um, allowed her to, just to develop and grow and holding her to the same high standards or expectations as your other kids. Right. That’s been part of your secret.
Joe Ciriano: And she did actually go to the Catholic school.
David Hirsch: Well, she did. Okay.
Joe Ciriano: For about three years. Part of the reason was it was a small school and we knew. That 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’s kind of just, just pick on her because she’s different.
And if that were to happen, then everybody on the faculty and staff in the, of them would, would step in and say, well, this is not how we treat people.
David Hirsch: I love it. So, uh, Uh, 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 past side. So the two of you were, you know, able to advocate for grace and make these decisions jointly, but I’m wondering what were some of the challenges once joy was diagnosed and she was going through these treatments,
Joe Ciriano: you know, prior to her diagnosis, the biggest challenges or logistics.
Right. We’ve got three kids that were very active. So, you know, 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, to get everybody where they need to be. And, and, but, you know, that was, that was one of the bigger challenges was, was just the logistics.
We were happy with the school that they were in. Um, You know, 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 or nine month period
David Hirsch: while,
Joe Ciriano: you know, it was just a lot to handle, especially for younger kids to come home and see mom.
Kind of incapacitated. You know, she did the five surgeries, she did chemo and then she did radiation and, uh, 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, all we moved. So as far as you know, what the kids were.
You know how they were impacted by all of this is what it came down to is we basically set a new normal, right. So, 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, this is our new normal, our new reality. And she did that for, uh, almost two years, I guess it was after she had a recurrence in 2007 and the kids.
Needed information at different levels. You know, you, you had one that was in high school and the other one was middle school and then high school. And then Charles was, was young. And he was only, only five when she was diagnosed. And grace was of course too. So they needed information at different levels.
Right. 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 asked. You know, if they were curious or they wanted to know about something, I would not keep it from them. I would, I would tell them, but I kinda, in my mind said, this is what I think that they need the information that they need to be able to process and deal with it.
And then we just kind of, it was 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, you know? 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.
Uh, so we were able to do a lot of the things that normal families do. You know, we could travel and go on vacation and she could drive. She went back to work and 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, you know, she was just kind of struggling, catching her breath the whole time. So we took her in and, you know, they immediately hospitalized her for about a week when we got back, you know, here we are, again, this is a new normal mom. Can’t make these longer journeys.
And you know, it takes too much out of her, but, you know, I told you before she was, 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, you know, not, not dial on them. That was, that was her motivating factor. And she was always saying what’s 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: while. Well, she sound like she put ’em about as good a fight on as anybody could her will to live. You know, it was beyond the typical situation, given the fact that you have four kids and all the other things you have going on.
And, um, I’m wondering, um, 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, um,
she and I very much co-parented and we were both pretty passionate people. So we, by no means had a perfect marriage, but it was a good marriage. You know, we would argue all the time. I mean, you know, relationships are work and it’s about compromise, but you know, 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 role at whoever solution we were following. The other one would not be going well. That’s cause that’s what your mom wanted to do. Right? So, 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, just take a breath. Let’s, you know, clearly you’re, you’re frustrated from, from what’s going on during the day. So losing that check and balance and you know, the, I often tell people the, that there’s a very large distinction between being a single parent.
And being an only parent, because if you’re a single parent, meaning 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 for, if it’s every other weekend, You know, that’s two days when you can kind of, okay.
Even if you have your kids for, for those two weeks in the weekend, in the middle 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 seven, and it’s hard to stay caught up with stuff. And you know, for me, one of the most humbling things was, 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 just need to be, I mean, we had people lined up, you know, from whether it was from the church or from the school or just from the community lined up to, uh, we, I took her to Boston the first time she went for her treatments for the next, uh, 20 months.
There were people that 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 that’s, you know, some of that is just, it was a very close knit community. Some of it was, she was extremely active in the community. You know, on always being sought to be on boards and, you know, being a female attorney and in a smaller town, kind of, kind of put her up where people were really trying to seek her out for, for advice and, and to participate on boards and she loved doing it, you know?
So she was, she was a people person. So it was a reflection of that. And our, 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, and, you know, one of, one of the other challenges it’s, you know, I want to think about it.
It doesn’t seem like it’s that, that big of a deal, but it really was, you know, 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, you know, when you’ve got conflicting things, you can’t be everywhere. You know, we, we probably one or both of us were, were at probably 90% of our kids’ games before she passed away.
And you know, when, when you’ve got to sit there and say, I can’t do this.
David Hirsch: Yeah, well adapting, like you’ve had to, um, required you to do different things and you know, you were already in his own defense, there’s four of them and two of you and all of a sudden, you know, you’re down to four on one and you, your approach has to change, right?
You can’t do the things that you were able to do when the, you know, four on two. Right. And I don’t mean to make it sound as basic or as simple as that, but the reality is. No, there’s going to be some give and take. And it sounds like you did the best job you could and the circumstances and everybody had to make the adjustment.
It wasn’t just you, right. Everybody’s expectations are shifting a little bit.
Joe Ciriano: Exactly. Exactly.
David Hirsch: So what impact has crisis situation had on Ashley? I’m Leanne, Charles, as well as the rest of your family.
Joe Ciriano: So one of, 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 crisis at school.
So she was upset about something that couldn’t get her to stop crying, whatever the situation was, they would go to him, they would call him, he’d go down to the classroom. He was, you know, good at, at calming her down. But you know, 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, you know, he, he very willingly, you know, wanted to help out do that. Some of the other challenges, you know, dealing with some, with special needs is, is. Learning patients. And we all have to work on that and, and, and try and improve that. Uh, you know, as you’re well aware of patients, oftentimes it is a derivative of how your day went.
As delightful as she can be. Uh, as, as you’re well aware, kids down syndrome can be hand a handful to deal with. Cause they’re stubborn. And unfortunately in my family, stubbornness, runned, always up the tree. Um, so, you know, that’s, that’s been a challenge for me. I, 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, you know, whether it’s because they only invited two or three people or whatever the reason was for not embodying her, that they’ve seen that.
And I think for them, It is, has made them even more compassionate and considerate to think about just in general, how your actions impact are going to impact the people around you
David Hirsch: now. That’s great. What does Emily do? I know
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 doing September. Which is, 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, the moniker of, of grandpa when they tell me. So we decided I’m going to be Papa. Joe is to,
David Hirsch: okay.
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
Joe Ciriano: thank you
David Hirsch: really good at, so, um, I want to give a shout out to Justin Yob, uh, this child psychologist at UNC Lindberger 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: So it was, I remember. Quite vividly. It was in January about, I want to say two weeks before she died, we had just had a big snow storm. Uh, chapel Hill was.
David Hirsch: Wait a second. When you say big snowstorm, this is North Carolina,
Joe Ciriano: North Carolina standards, but this was, this was for us. It was pretty big. I mean, you know, we, we get three or four inches.
This was more like eight or nine inches. Okay.
David Hirsch: So it was legitimately a snow storm,
Joe Ciriano: a lot of ice too. That’s okay. That’s what we do instead of snow, but you know, so we were in the hospital. I had friends that were driving the kids back and forth to see her, the hospital. 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. Oh my
David Hirsch: God. And
Joe Ciriano: you know, for me, I was just, I was flabbergasted by that because you know, that’s not the new norm and, um, So at that point, and as it turned out, they were wrong. She didn’t have the condition that they thought she had. Oh my gosh. But you know what, when somebody’s giving you a deadline here, do this.
And, you know, he had combined, he said, you know, is there anything I can introduce himself or anything I can do? And I’d asked him for advice on how the talk to the kids about this, where, where we are, what do we need to do? And this was, it was probably about a month before she passed. So, you know, he gave me some, 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, you know, what, what she’s proud of, what, what are her fears for them? And, you know, that is something that I encourage parents to do. Regardless of your health, cause you never know when it’s going to go away. So if you write letters to your kids, you know, if, if you’re really good at this, which I’m not great at the falter, you write a letter that says on your high school graduation and your college graduation yeah.
On your wedding day, this is what I want you to remember. So that was, that was. The advice from Justin. Um, it was very helpful. Uh, he and I have hit it off since then. You know, as you’re aware, when we started this group, this was the summer after joy died. He had called me and said, you know, 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 the, 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, not in the least. He was, um, you know, we’d come up with this, 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 was seven or eight of us that came to the meeting.
It was the worst, most gut wrenching thing you’ve ever seen because, because what are we going to do? Well, we’re going to introduce ourselves. So they want us to introduce ourselves until a little bit about your story and what you were doing with,
David Hirsch: Oh my God. You know,
Joe Ciriano: 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, all of this stuff.
And you know, Don, Don has said it many times. He said you, after that first meeting, I turned to Justin. I said, this was a great idea, but I don’t think anybody’s coming back. It sounded
David Hirsch: like it would be a very painful experience, right. To relive that, you know, 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, most of bonded in a way that you wouldn’t know otherwise.
Joe Ciriano: No, that’s, that’s absolutely true. And the group almost, I chatted with Justin about it, the group became almost self facilitating. Right? So while Donna, Justin, where were the official facilitators there?
Right? They were the quote experts, you know, 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 that would go. You guys are living at what are you thinking? And it was such a great interaction. You know, it really got to the point where people would walk in and they’d sit down and nothing was off the table that go, I’m having to deal with this.
Me for a single father, having to deal with, with puberty, with a developmentally disabled child. And both my older girls were gone. That was a challenge. That, that was a huge challenge and a fear from my perspective. So, um, 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.
Um, and it was, it was pretty amazing, uh, with the group and. W, you know, we would call each other out the questions and the criticism was constructive, 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 a really, truly a peer to peer network, right?
Not people that are professionals trying to help you, but just guys for letting from one. Band the next or one dad to the next, you know, what, what you’re experiencing. And there’s probably no better people to be in contact with. Um, 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 them? We
Joe Ciriano: met monthly,
David Hirsch: monthly for four years.
Joe Ciriano: Wow. From the time we started. Uh, we met monthly for four years and, you know, we, they to Don and Justin’s credit, you know, they had student athletes at chapel Hill, uh, volunteer, excuse me, 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, and, and getting what they need out of, 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, you know, 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, um, 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? You know, if you go to the, to the. 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 10 questions. Each of us answered it. They took it back.
They spliced it and it was, it was just, you know, they spliced in a little vignettes. So you would hear two or three of us speak on each topic. Very short. And it was a wide range from, from dating to what was your biggest failure as a new single dad? What it was, it was almost, it was comical because we had so many of those.
Hi, I’m Joe Siriano. My wife joy was diagnosed January of 2005 with breast cancer. Um, Bruce ham, my wife got sick in September of 2009. Six months later, she passed away. Steve Steuben. At the time we had two children they’re ages two and four, and to complicate matters. We were also expecting a third.
David Hirsch: I am Dan Pelletier
Joe Ciriano: during her sickness, all of our.
Strength and energy was focused on
David Hirsch: her and her trying to get better.
Joe Ciriano: And obviously that did
David Hirsch: not happen.
Joe Ciriano: 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.
David Hirsch: God. I tell everybody this group absolutely saved my life.
There’s life after loss.
Joe Ciriano: And I think one of the things that,
David Hirsch: um, A
Joe Ciriano: person going through this has to do is to, um, give oneself permission to, if you’re feeling lousy, say that’s
David Hirsch: okay. If you’re grieving,
Joe Ciriano: 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, you know, 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. Right. 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, it’s been a big deal. I’ve always been a believer that things happen for a reason. And when we. Found out crisis diagnosis. Somebody shared with me, they’re like, 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 quote appropriate things that you, that you do, but it wasn’t until Grace’s diagnosis and, and enjoys diagnosis.
That I really began to take solace in the church and just being there, you know, sitting through mass gave 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, You know, and in the middle of all this, I lost my job and was out of work for like nine or 10 months while.
So when you go through this, a down syndrome diagnosis, a wife diagnosed with cancer, all of these surgeries, losing your job, just 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 multilayered.
It’s not just your church, family. No, the people within your church, but it’s the health care providers really embraced you. And then your non church fronts, right? The broader community, you know, really wrap their arms around you and your family. And, uh, you know, it really teaches you something
Joe Ciriano: exactly,
David Hirsch: you know, what’s important and you know, how do people react to adversity you directly?
And then, you know, the, this. Friend group, the support group, you know, indirectly, you know, people just step up, which is it’s, it’s like divine intervention. I don’t even know how you’d describe it. And it’s, it’s very powerful to know that you’re embraced and that you’re loved and that, you know, you’re going to be okay.
Right. You don’t know how, but you’re going to be okay.
Joe Ciriano: And, and, you know, if, if you, for people who might read the book, it’s kind of rooted in our stories is as the seven would have 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 I mean, roughly the same thing I said about. Wanting to get crisis diagnosis or wanting to do the amnio all 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 know, you’ve got to get past that.
And, and, you know, for, for the seven of us, we were just in the beginning, just getting by. You know, w we were missing, dropping the ball, missing stuff, uh, doing all kinds of, um, stupid things. And, you know, I mean, it, it changes and that’s something that you can see it in the book. You can see how some of our outlooks changed.
We laughed about a lot of stuff, which was good. Um, One of Bruce’s favorite lines. And he was, he was kind of the comedian in the group, but he would sit there and he would say, yeah, you know, 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 much.
David Hirsch: That’s fabulous. And it is a perspective, it’s an important perspective. Right? You know, what, what are you 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 S 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 a low, where are you going to go? You know, what’s, what’s that child going to learn that is, is one of the most critical pieces of it.
You know, 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 father’s 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. You know, there’s stuff out there. Sometimes it’s harder to find for, for down syndrome. I recently discovered a Jesus play house 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, you know, center. That promotes down syndrome and they do fun stuff with the kids. I do developmental stuff with them. They do it for adults. Um, so, you know, they’re, and, and the biggest thing I think is they can help people find some of those resources, 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, uh, Nancy and Paul, Johnny GGS parents are literally neighbors. Fellow parishioners at st. Anne’s church in Barrington, where we live and, uh, Uh, their oldest Franco and our youngest Addie were classmates, uh, K through eight.
And, uh, so, you know, we’re like at the epicenter GGS Playhouse epicenter, right. And, uh, you know, it started out very humble beginnings, you know, a dozen years ago now 36 play houses around the country. One in Mexico and applications are 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. Right. There’s amazing resources there.
Joe Ciriano: Yes. Very much so
David Hirsch: good advice. So, um, 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 agreed to do a lot of these things in public about the book, about the group, number one, both of Joanne.
And I have always tried to instill in our kids that it’s important. Give to the community and how are 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’s it pays back in spades. I mean, it’s, it’s incredible.
So, you know, w we’ve gotten no response to the book and the website, hundreds of emails from people. That have said that this has helped him. And that, that alone is very cathartic, you know, to feel like you can do that. And so, you know, with, with your, 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, uh, Important, like you’d emphasize not just to be good role models to our kids, but, uh, you know, what goes around comes around. Most of the dads said that one of the reasons that they’ve stepped up is that they wish there was somebody else that they could have talked to. You know, that first year of the first couple of three years after they found out about their situation and.
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 th I think I’ve, I’ve spewed plenty. I would like to say, I think it’s, it’s, it’s great that you’ve gotten behind this cause and, and recognized a need that was out there and give your time. To do this.
Um, I’m sure it’s very time consuming and having to track down people and get them interested. Number one, and then number two, all the followup that comes from it. So, you know, I’d like to thank you for that and for the opportunity to be here with you.
David Hirsch: Yeah, well, um, we’re, uh, members of the mutual admiration society that if somebody wants to get a copy of the book, the group.
Seven widowed fathers, reimagine life. You have the video or contact you, how would they go about doing
Joe Ciriano: that? 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 if I should not return. But if you go to that site, it’s got some excellent resources, but it’s also has one of the header, says the book and it’s got information on how to order.
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. That’s 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, um, 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 father’s network. A mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation, your own, please go to 21st century dads.org.
Thanks again, Joe.
Joe Ciriano: Just 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. That’s 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, and again, to find out more about the Special Fathers Network, go to 21stcenturydads.org, 21stcenturydads.org.