Dad to Dad 59 – Sean Farrell wouldn’t change a thing about his son with Down Syndrome.
Sean Farrell: We had a nurse there who was the mother of a daughter with down syndrome and she pulled me aside and she said, listen, you said, by the way, you won’t believe a word of a man. I’m about to say, but she said, there’s gonna come a day when you will say, I wouldn’t change a thing about Sam. But she was exactly right.
You know, the statisticians will tell us that families who have somebody with down syndrome, statistically, they tend to be happier and they tend to be more satisfied with life and see purpose in life.
Tom Couch: That’s Sean Farrell, father of a son with down syndrome. Shawn’s the vice president of sales at RDX bio-science.
And he’s our guest on this dad to dad podcast. Here’s our host David Hirsch.
David Hirsch: Hi, and thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of children with special needs presented by the Special Fathers Network.
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 kids connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers. To find out more, go to 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group.
Please go to facebook.com groups and search dad to dad.
Tom Couch: So let’s listen now. As David Hirsch talks to special father Sean Farrel.
David Hirsch: I’m thrilled to be talking today with my good friend, Sean Farrell of Franklin, Tennessee, a father of two boys, vice president of sales for RDX. Bio-science Sean, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Sean Farrell: Thank you David. Very glad to be here and to try to support the good work that you’re doing.
So thank you very much.
David Hirsch: You and your current wife, Janae have been married for five years and are the proud parents of two boys, Joshua four and Sam 12. Who has down syndrome. Let’s start with some background. Where did you grow up? Tell me something about your family. Sure.
Sean Farrell: I was born in Starkville, Mississippi.
My father was killed in a car accident when I was very young, just about 12 weeks old. So my mother and I moved to her home where she grew up in the Williams port, Pennsylvania area, therefore just about a year and a half or so. I think I was about two years old when we moved to Kingsport, Tennessee, up in the Northeastern part of the state.
Uh, where I grew up through high school and attended university of Tennessee. And then I’ve kind of bounced around the Southeast a little bit as my job has kind of taken me a few different places. So that’s the brief run. Great.
David Hirsch: Um, you had mentioned that your dad passed away. I was sorry to hear that. So your mom remarried though, didn’t she?
Sean Farrell: She did it. She remarried when I was young. I’ve got a younger brother and sister through that marriage, uh, who were very close and who I’m very lucky to live close to today. Except for my, my stepdad, who I have always called dad, uh, he’s in the Atlanta area, but everybody else is reasonably close by, which is great.
You know, I still maintain a good relationship with everybody. There were some difficult years growing up. I think the absence of my father, uh, has always been a, kind of a massive presence in my life that has shaped me probably more than I realized I had a good relationship with my stepdad. I think it was probably always clear that he had.
Um, know two biological children, and then he took good care of me as a stepdad, but when things got difficult with he and my mom, uh, I became a source of emotional support for mom and, um, that made things really strained with him. And then of course the divorce in my high school years, it was a very, very difficult time.
In fact, at the time I swore that I would never, ever get divorced, which. Ended up not being true, but, uh, I’m very happy that over the years, both he and I were able to make the effort and we both wanted to have a good relationship and we still do. And he’s, you know, he’s grandpa of my kids. I think he was always understanding of the fact that, that the absence of my biological thought it was still this kind of this big presence in my life.
David Hirsch: Well, thank you for sharing and being so authentic. When you think back about the relationship with your stepdad. Who was really your dad. Cause you never knew your dad, right. You were so young.
Sean Farrell: Right?
David Hirsch: Right. Is there any advice that he gave you either as a younger person or perhaps as an adult that uh, resonates today?
Sean Farrell: Sure. You know, I think he has always a great work ethic about, about his work. He was a chemical engineer and I think he was a good. Source of guidance as far as kind of applying myself to do some schoolwork and things like that. I remember he tried really hard to get me to not just do the homework, but enjoy it.
And it was really, really successful in getting me to enjoy it. You know, I just, I think just a good guy. I think it was an act of generosity on his part to, you know, to become a stepdad. And I, I always appreciated that and I think my best memories, uh, were, you know, things like, uh, playing basketball. No on the driveway with younger brother and sister as well, and throwing football in the yards.
And, you know, those are just kind of the most profound moments and they will always mean a lot to me. That’s great.
David Hirsch: So I’m wondering about your grandpas and what role they played, perhaps starting on your dad’s side and then on your mom’s side.
Sean Farrell: Yeah, two good men on my father’s side. And I’m sure that this is in part because.
He and all of my aunts and uncles on that side collectively kind of played the role of my father. They helped me get to know him and, but my, my granddad in particular, just as you know, he’s a hero, he’s a, he’s a giant in my eyes and always will be there’s Connie Farrell. You know, he was the patriarch of the family, Irish Catholic seven kids, you know, and all of his kids have gone on to have families and big happy families.
It’s a, it’s a joyful. Group of wonderful kids that he raised. And I very much have wanted to kind of model, you know, how I father and what I do based on what I saw him doing and what he did for me. So, um, he’s always been 10 foot tall in my eyes, so, and then, um, you know, good man as well, just a very different kind of man, uh, is my mom’s dad, uh, in Pennsylvania, man named bill McClain who, uh, just, uh, is salt of the earth.
I, you know, My granddad Ferrell, I thought of as Santa Claus in some ways. And my granddad McClain was always kind of a funny version of Archie bunker and some plays. And, um, but, uh, you know, he’s one of these guys where he could, he could look at you and, and know everything about you. And he was completely honest with you.
And also a big influence taught me how to shoot a 22 and just shoot a shotgun. And he taught me how to. You know, I always had some great times growing up there. So like my hero is my granddad Farrell, but my granddad McLean, huge influence as well. And, um, I was lucky to have great granddads, you know, and as well, my stepdad’s dad, uh, I was privileged to have three grandfathers.
So, you know, my granddad Fisher, Charles Fisher in West Virginia, um, just another really, really good man, extremely hard working. You’ve been a coal miner, but he’d also been mayor of a small town and just a fine, fine man. So yeah, so that, that gap I had in my life of not knowing mine, my natural father. Um, really, I had a privilege to have a great team that kind of helped help sort of fill that gap and, and influenced me a lot of ways.
David Hirsch: Yeah, well, you were very fortunate cause not everybody gets to know their grandparents and it was, um, looking back wonderful that the three of them could step in, lean in if you will. Um, because your dad died at such a young age and especially your grandpa Ferrell, right. Who had a large family, but he lost one of the sons.
You know, and you know, as parents today, both of us are parents. You know, one of your worst nightmares is God forbid, something happens to one of your children at whatever age. It’s just not the natural order.
Sean Farrell: No, it’s not. And he actually lost a second child. They had a young daughter who, uh, who died of SIDS.
I don’t think they called it sits in the day, but an infant daughter, they lost. So he knew some pain that he shouldn’t have had to deal with. Fine, man, and just strong. And I can’t say enough about him. Great.
David Hirsch: So did anyone else serve as a father figure, uh, while you were growing
Sean Farrell: up? Yeah, I had, um, really big influences.
Well, I mentioned that, you know, all my aunts and uncles on the federal side in part, because they’re wonderful people, but in part just, you know, kind of playing that collective role of my father. So I I’m really privileged to spend time with them in summers growing up and. No, I still, they have no idea what they mean to me.
Other big heroes in my eyes were my uncle Mike on my mother’s side, just a extraordinarily good man in growing up. I think I was careful as a teenager to watch carefully the conduct of adult men and to watch what I admired and what I liked. And then I think I kind of picked and chose my hero was very, very carefully.
No, it’s a fine man named Danny who was very active in our youth church group and cared a little organization. And he was always helping the way he devoted himself to building housing for the poor. Danny’s a giant in my eyes. So, um, but yeah, I was always very careful to choose my heroes and to kind of watch them and to kind of figure out for myself what I wanted to be.
David Hirsch: Excellent. Well, I’ve often said, uh, we want to emulate the good role models in our lives and learn vicariously through the bad ones. So we don’t make some of the same mistakes. Yeah,
Sean Farrell: exactly. Right.
David Hirsch: So, um, you mentioned that you went to the university of Tennessee and when you graduated, where was life pointing you?
What were you thinking about?
Sean Farrell: Um, so I had done some work during school, um, working with America online. I actually worked with my mother, a partner in a business that we had started the very early days of the internet, but kind of figured out that that wasn’t really where I wanted to be. I wanted to get into healthcare.
Most of my roles since graduating from college had been in healthcare sales and now healthcare sales management. My focus to this day is I spend half my time running a healthcare sales team and some strategy product projects that support that. So, uh, I’ve worked with hospice programs and pharmacy benefit managements.
I’ve worked in home care, uh, and in the last several years I’ve worked at diagnostics. So, uh, yeah, I found myself this little niche of building healthcare sales teams, and I’ve been lucky that it’s worked well for us and I enjoy it.
David Hirsch: That’s fabulous. So I’m sort of curious to know how you and met.
Sean Farrell: Yeah, she’s amazing.
So I was living in Virginia Beach, Virginia while she lived in Vancouver, British Columbia she’s Canadian. So it was not easy to meet. But one of her good friends from grad school was marrying one of my closest friends and it was Sam’s godfather at a wedding in new Orleans. And so it was Memorial day weekend.
So, uh, Janina were both in the wedding party. We both planned for some extra time to spend in new Orleans over the holiday week. And yeah, we met in a wedding party and thank God we hit it off. And our first date was a swamp tour.
David Hirsch: Yeah. Can’t get any lower than that.
Sean Farrell: Yeah. Yeah. It’s you know, the old cliche about a Canadian guy in a, in a Southern man meeting in the swap.
So, uh, so, but, uh, yeah, and then we long distance dated for, um, gosh for a year and a half, I think made some trips to see each other, you know, Skype conversations every day and you know, and every day I just knew for sure she was going to meet some great local guy who was going to be right there in her backyard.
And she would give up all the work of, of dating this guy 3000 miles away. But. You know, to my shock, I still don’t know how I pulled it off, but she stuck with me and we’ve been married now five and a half years, and she’s a fantastic mom and an extraordinary stepmother. Excellent.
David Hirsch: Well, thank you for sharing
So let’s talk about the special needs community. First on a personal level before Sam’s birth, did you or your first wife have any connections to the special needs community?
Sean Farrell: No, not really. I have. A great uncle. My mom’s uncle who, I just have a few memories of as a young guy who, who has down syndrome he’s passed away some time ago.
So there was somebody in our extended family with down syndrome. Um, now later after my son, Sam was born, I found out that I actually carry a translocation. I’m usually down syndrome, 95% of the time. It’s just a accident, spontaneous conception. In my case though, I actually carry. I’ve got two genes that are stuck together and it makes it a bit more likely for that to happen.
And I just had no idea. So, but really, um, aside from unknowingly carrying this translocation, um, I wouldn’t say I was connected or active in any way and any kind of special needs community, not at all.
David Hirsch: Okay. What was it like when you learned about Sam’s diagnosis? How did things transpire?
Sean Farrell: Well, this was during a previous marriage prior to genetic.
We did not have a prenatal diagnosis. Uh, we had selected against prenatal testing and during sonograms and other opportunities where they might have caught it. They just, they just didn’t. It was the day that Sam was born. The birth was very, very difficult. Uh, his mother, um, had to have an emergency C section and Sam was in a lot of trouble when he was first born.
So is that Gar score for those who know what those are? It was, it was just a one at one minute. Which meant that he had a pulse, but that was it. There was no, you know, no signs of life aside from a slight pulse on is that of course score at two minutes, I think was just the two. So he was in a tremendous amount of distress, so they immediately whisked him away.
And then it was probably just 15, 20 minutes later where a physician came back from Nikki to talk to me. Sam’s mother was unconscious because there were still in her back up and they let her go to sleep. Um, and he said that it’s not definitive, but we see some signs that make us, uh, make us believe your son probably has down syndrome.
And one of these moments you don’t forget. And I was in a bit of shock, but remember vividly and I’m sure enough they were right. I mean, they, they had noticed, you know, kind of the crease across his Palm and his feet and a little bit of a shape of his eyes, a little bit of shape of his neck, some of these definitive signs.
And, um, that was how I found out. Well,
David Hirsch: so, uh, when your wife came back from the surgery, was that a awkward or difficult conversation? Or how did that go down?
Sean Farrell: It was very difficult. So I spent some time in NICU with Sam, you know, they had, they had fully revived him and stabilized him and he was doing well.
And I was trying to figure out what that meant. And, um, they told me that she was waking up in recovery on her mother. Was there. So I went back out and sat down with her and I just really kind of probably just repeated the words that they had told me that, you know, he’s doing okay. But there are some signs that make them believe that he probably has down syndrome.
So I remember her crying and not saying much, she was also, you know, kind of groggy and recovering, but, um, but yeah, so she heard that news from me and, and it was, it was challenging. I, I don’t know if I’ve shared the news well, or if I did it badly or what it was, but I just, one of those hard moments. Yeah.
David Hirsch: that’s just the reality of the situation and whether it’s the doctor, you know, telling you both at the same time or because the information sort of came on a Daisy chain, passion, you learn first and then shortly thereafter, whether it was minutes or hours, like you were saying, it’s usually pretty shocking, right.
If you’d not know or have any anticipation of that.
Sean Farrell: Yeah, it really was. And David I’ll share just a couple of quick stories from that, that first day. First because it had been a difficult birth. Stan had a intercranial bleed. His skull had been fractured just a little bit and it had caused a little bit of bleeding and that had caused him some seizures.
So Sam was born in Montgomery, Alabama. They brought in a helicopter to fly him to Birmingham, to the children’s hospital there. And this, this was on his first day and I overheard some nurses talking to each other saying, you know, have you ever heard of the helicopter coming here? And I said, I don’t think we even have a hella pad.
Where’s it going to land? I guess it’s going to be in the field. So it was a really unusual event, really serious event. So after spending a couple of hours there, Sam was flown away to Birmingham. So I had to figure out, am I going to stay here with Sam’s mother while she recovers? What am I going to do?
So I made the drive there, but before I went there, the second story I wanted to tell is we had a nurse and I think this is one of these. One of these moments where, you know, God lets you know that he’s there for you. We had a nurse there who was the mother of a daughter with down syndrome and she pulled me aside and she said, listen, there’s gonna come a day.
You said, by the way, you won’t believe a word of him. What I’m about to say, but just hear me out. She said, there’s gonna come a day when you will say, I wouldn’t change a thing about Sam and I’ll never forget that. And she was exactly right. I heard that. I didn’t believe a word of it. I thought, how could I ever say I wouldn’t change?
You know, the fact that my son. Has this thing, but she was exactly right. He was exactly right. You know, it took me a while to come around, but that’s, that’s my fault, not Sam’s. But, uh, I remember those a day, you know, couple of, couple of years later where I realized I remember her, I remember that being comforting, but I remember she didn’t believer, but she was right.
I wouldn’t change a thing. Anyway, Sam spent a few days at NICU in Birmingham, and then they transported by ambulance back to NICU there in Montgomery where. It’s about 10 days or so before we finally got them home. Uh, and I remember at that point I was so eager just to get my boy home. I kind of didn’t care anymore about down syndrome or anything else.
I just wanted them home. So I think that time that I had to wait to get them back actually kind of helped me more quickly get over, uh, his down syndrome diagnosis. Cause I, I just wanted my thumb home. The hell with everything else, bring them home. So I look back on that time that I had to had to wait to get him.
It was probably really helpful for me in a, in a way.
David Hirsch: Yeah. Well, there’s the issue of down syndrome, which you can’t do anything about. And then there’s the child’s
Sean Farrell: health,
David Hirsch: which, you know, it sounded a little, uh, tenuous, right from the beginning because of the difficult birth and, uh, what a profound thing to hear, like within 24 hours of the time your son was born.
But, you know, here’s somebody with some insight and some experience sort of leaning in, like you said, maybe, you know, God’s speaking to you through this, you know, nurse that things are going to be okay. And you heard what she said, even though you might not have fully appreciated or understood it at the time, but what a profound insight.
Sean Farrell: you. Um, yeah, it’s it was unforgettable. And then this is one of the ways that, you know, I think parents, in my situation, we then hoped to find ways that we can then, you know, kind of pass along those wisdoms or piece of help, even if people don’t believe what we’re saying. I, I look for chances to try to, uh, to try to give what I was given.
David Hirsch: Yup. Was there any other, um, meaningful advice that you got early on that, you know, comes to mind? You go
Sean Farrell: a lot of. Some good information from the community that was there in Montgomery for parents who are part of the first call program that they had there. I remember not really being sure that I wanted to be involved or the needed to be involved, but just, you know, meeting some other people who are in similar situations, I think was helpful.
I tend to be a Rose colored glasses kind of guy. So I was viewing this as no problems. You know, Sam is, Sam is great. And you know, there’s just not going to be any kind of challenges. So hearing from some other families about, you know, here’s some challenges that may occur in these parts of life. I kinda didn’t want to hear that at the time, but it was good to, you know, it was good to have a heads up about, you know, maybe some delays in potty training delays in speaking delays and some other things and how you handle this and that.
Although I didn’t want to hear some of that good advice at the time. I think. It was really good to hear it. So I’m a, to this day, a huge fan of first call programs, very thankful for them, you know, whether it’s a sense of community or sense of advice. I think those things are extraordinarily important.
David Hirsch: Well, thanks for sharing. I’m wondering, looking back on it, if there were some important decisions you made as parents of a child with special needs, what was instrumental? Um,
Sean Farrell: I think early intervention was important and I was glad that those were some resources we had available, you know, early.
Physical therapy and occupational therapy because of some challenges that we’ll talk about a second, that came up a little bit later. I think Sam for a time was deprived of those things, but I think the more that you can do early on the more benefit it will be. And
David Hirsch: well, I didn’t hear you say this, but it’s common that one or both the parents could be in denial about, you know, the development issues or the delays involved.
No, there’s a lot better information today about individuals who are born with down syndrome, you know, about weak muscle tone and other issues like you were alerted to. And, you know, the sooner you can sort of get with the program and understand that engaging erring on the side of engagement is only going to lead to better results, no guarantee, but on average better results.
And I think that’s what I heard you saying.
Sean Farrell: Yep. Yeah. That’s exactly right.
David Hirsch: So not trying to focus on the negative, but being real about the situation. What were some of the bigger challenges that you’ve encountered?
Sean Farrell: Um, w there were several, because it became more evident over time that Sam’s biological mom has some psychological pathologies.
She was eventually diagnosed with borderline personality disorder and some other challenges. Those are things that were there beforehand, but I think Sam’s birth. Brought a lot of that to light. Uh, it was especially difficult for her to kind of accept and to understand. And then at some point it flipped for her where it became the center of her life, where she wanted to define herself as supermom, doing everything, you know, around the, around this, this, this child, with these frailties that started a cycle, that it was just extraordinarily difficult, which eventually led to her filing for divorce.
And a very difficult custody battle that extended over to three years. And it was just extraordinarily challenging. So I mentioned before that I saw this difficult divorce and I knew how hard that was on parents too, but really hard on me, really hard on my brother and sister, I swore and swore and swore I will never go through that.
So I had planned, even though I was in an unhappy marriage with these challenges, I had planned to stick it out. And do you know, this is, this is what. I’ve promised to do, uh, and just, you know, couldn’t believe the turn that my life had taken, that I too was in this situation. So, um, once she filed for divorce, I, at first didn’t seek custody.
I just wanted of course, full visitation rights to make sure that Sam was protected. But as her behavior became more challenging, um, I realized that Sam needed protection. And then as I went on, she began to. Well, for one thing for herself, she pretended to have cancer, very elaborately, and she had prayer groups for her cancer and she was fundraising.
She, um, she invented some, some illnesses that she thought Sam was suffering from. And I don’t know if she believed it or if it was just for the attention, but she would take him to emergency rooms and claim that. You know that he hadn’t had bowel movements in many days and they would hold Sam down and give him an animal sometimes to animals.
And it was just kind of repeated procedures, repeated trips to the doctor’s office. That was more and more shocking and alarming to me. It took years because she wouldn’t participate with a court process and she kept flipping lawyers and all these issues of pretending to have cancer. But over, over an extended period of time, finally, I was able to get custody of Sam and to make sure that he was protected and make sure that he has everything that he needs.
And he got back on track with physical therapy and occupational therapy and all of that. So, but it was an extraordinarily trying time during the marriage and, and through all the custody hearing. But I think that. Sam’s down syndrome in many ways, protected him from some pain that another child might have endured because Sam, I think was not as sensitive to the fact that things are not as they should be.
So I think for Sam, the recovery, after that, and, you know, kind of getting through all of that, I hope, and I’m pretty sure that for him, he was a little bit oblivious to some of the events that surrounded him. And I think that kind of gave him a measure of protection through. For everybody else was just a really trying custody case.
David Hirsch: Well, it’s interesting. You can reflect now looking back on it, that, that might’ve been a silver lining at the time. I think you also mentioned, I can remember a previous conversation, but you know, it’s not like she moved to the other side of town. Didn’t she move like 500 miles away.
Sean Farrell: Yeah. She chose to be close to her mother in, um, in the Greenville, South Carolina area.
And I was in Virginia Beach, Virginia. Which meant that for me to see Sam, you know, and it was a thousand mile round trip every other weekend, which of course was very difficult. She actually, at first asked the court that I not be permitted to see Sam unless supervised by the court. And there were a hostile number of motions on and on.
Thankfully the court did not permit that, but for a period of three or four months, I couldn’t see him at all until we finally had a court hearing, I would drive often what would make the drive there? And she would delay my visit. Well, I wouldn’t be allowed to see him at all. Then I’d have to drive 500 miles back to Virginia without having a chance to have having seen him.
Wow. I haven’t mentioned before that I had a stepdaughter who, you know, I loved, still love, but the court couldn’t compel me to visit the stepdaughter because she wasn’t my biological daughter. So from that time forward, as soon as she filed. Any relationship I had with her was severed. And I wasn’t, I haven’t been allowed to see her since then.
So everything about that was difficult from the, from the trips, you know, not being able to see him, plus just wondering what was happening to him while I wasn’t there. And I would get reports from physical therapy and speech therapy and these different things. And I would see that, you know, he’s missing two thirds of his appointments and he wasn’t going to school.
And it was a really, really trying, extremely trying time. And even for years after the divorce, she continued to find a lot of. Very hostile motions. I think there was some 45 motions and a really short amount of time. I was constantly in court and constantly having to defend myself from a lot of very, very hostile acts.
And thankfully the court, every single time ruled in my favor, all of her stuff was dismissed with prejudice, but it still meant attorney’s fees and time away from work. And some really, really difficult times that. Thankfully have gotten more quiet over the past year and I’m very glad to be through it.
David Hirsch: Yeah. It sounds like some dark times that, uh,
Sean Farrell: you know,
David Hirsch: you have the perseverance to endure and a while expensive and emotionally time-consuming and draining, you know, hopefully you’re a stronger person for it.
Sean Farrell: I hope so. I think so. I think we, you and I have talked about this. I think the key with all of this, it just, and the key for me to get through this is to completely focus on Sam and his best interest, as unhappy as I was about the, kind of all the hostility and all of this, I think as long as I could keep a laser focus on what Sam was needing and why I was doing what I was doing, then it gave, they gave everything some purpose aside from just what I want.
So I think that was also key and, you know, thankfully being successful in defending myself in every motion she ever filed, because I think it was clear to the courts and to guardians ad litem and to, you know, the psychological assessors and everybody that was involved with this, that I was trying very, very hard to make sure that my son was protected.
And then, because I think I was focusing on what was most important that actually made going through all of that in its own way. Okay.
David Hirsch: Yeah. Well, I’ve heard that before that I’m, if you always focus on what the best interest of your children is, you never look back with any regret.
Sean Farrell: Yeah. I think that’s exactly right.
David Hirsch: And that’s sort of what I heard you saying. Yeah.
Sean Farrell: Yeah. Thank you. And, and, and I think that’s true. And I think I don’t, I wouldn’t say this just in everyday conversation, but I’m proud of the way that I conducted myself. And I’m proud that I had an attorney who was also completely focused on Sam and I think.
Uh, and I’m also proud that the legal system saw that. I, I think it’s rare that a working father would get custody from a non-working mother. Cause I think we stayed completely focused on Sam. I think that prevailed and I’m grateful. And I, you know, I’m extremely grateful to the judges who saw this. There have been multiple judges cause there’ve been so many motions, but I think ultimately.
Right. One out and, and Sam is, is thriving and healthy now. And that’s of course all that matters.
David Hirsch: Yeah. Well, just to relieve the hero that you’re in a better place today than you were years back. So I’m sort of curious to know what impact has Sam’s situation had on his younger brother, Joshua, as well as the rest of your family.
Sean Farrell: Um, he is a blessing in, uh, and I don’t want to sound like I’m sugarcoating the challenges of special needs. So I’ll, I’ll, I’ll share that too, but I, I’ve got to say that it is typical of families, uh, who have somebody with down syndrome. And I think, you know, the statisticians will tell us that families who have somebody with down syndrome.
Um, statistically, they tend to be happier and tend to, they tend to be more, you know, satisfied with life and see purpose in life. And, uh, it’s an amazing influence on siblings who tend to grow up with a sense of empathy. They might not have otherwise been able to have. That’s fabulous. You know, San Jose Santana stick, big brother.
I think he’s benefited Josh enormously. And I know that Josh is the best thing that’s ever happened to Sam, because I think. Having a younger brother to, to chase around and to play with and keep up with, and you know, all the ways that they interact. His head so much to Sam’s life and I’m so thrilled to see it.
And I think he’s going to give Josh a sense of empathy and a sense of, you know, just what’s a little bit different than some people and other people have their own ways of being different. And I think it’s been extremely positive. You don’t want to help us. You know, Sam was 12 and Josh is four and right now they enjoy a lot of the same things.
I think it will be a little hard for me to see some of Josh’s tastes outgrow his big brother’s tastes, but I know that it’s going to happen. I think I’m ready to see that, but right now they are totally into the same, you know, pop patrol and the same games and the same. I mean, they’re bosom buddies and it’s, it’s a ton of fun to watch.
Now what effect that it’s had on Josh is Josh is starting to understand a little bit what down syndrome means and a little bit of some of the characteristics. So he will surprise us out of the blue, in a grocery store or at church or somewhere else where he’ll just point to some person and say, daddy, the, she had down syndrome.
Some people are okay with that. And some people are not. Yeah. A four year old being a four year old, there’s just no filter there. So yeah, he’ll see somebody, maybe they’re slightly heavyset or a slight almond shaped to their eyes, something like that. And he just wants to know and he thinks it’s great.
And every now and then he’ll look at his mom and me and he’ll say, what’s my syndrome. You know, what do I get to have
David Hirsch: younger brother syndrome, right? Yeah.
Sean Farrell: Well, yeah. That’s exactly right.
David Hirsch: That’s fabulous. So I’m wondering, um, What type of supporting organizations have your, you and your family relied on?
Sean Farrell: Well, you and I have spoken about GGS in the past. I hear it on your podcast. And I know that your friends and have interviewed, uh, GGS dad, they’ve been fantastic here in the Nashville area for people who might not be familiar with GGS, they give free of charge to everybody, an outstanding array of classes and tutoring and.
Events specifically for people with down syndrome and for their families, you know, for Sam he’s loved the cooking classes. Well, music classes, especially I think are his favorite they’ll offer job training and there’s new programs called Judas university that really help people that I’m kind of getting into their teen years and young adult years.
It’s a fantastic organization and we are really big fans. The other ones that come to mind, Jill’s house is a great group, not specific to down syndrome. There’s all kinds of diagnoses that they help with. They have a camp in this area that they call camp Rocky top, where Sam will get to join, you know, a camp for a weekend, about three or four times a year, where he gets to bride horses and practice archery and a lot of music.
And a lot of, he just loves it. He talks all the time about camp. My other favorite one is the predators here. The Nashville Preds, the, uh, the NHL team, uh, supports a large skating school. It’s actually run by Scott Hamilton, the Olympian, and they’ve got an outstanding, special needs program and all stars program, uh, that Sam is, is learning to ice skate and gotten his own ice skates.
So, you know, the down syndrome of the middle Tennessee area, VSA EMT is also very good. Best buddies is great, but for us, we’re most active in GGS followed by Jill’s house, followed by. Uh, the all stars program and, uh, just very blessed for some fantastic organizations in the area.
David Hirsch: That’s fabulous was special Olympics.
Big. There are not,
Sean Farrell: it is. And Sam enjoys it. He participates on the team with local YFCA. They’ve got a program called full circle and we just had, in fact, just about a month ago, uh, had some track and field where Sam ran a couple of events. And he got his picture in the local paper for that and huge smile on his face.
So those are great. I don’t know that Sam’s gonna enjoy sports quite as much as he enjoys music and camping. I think those are going to be his real things, but as long as he enjoys it at all, we’re going to keep him going to these events too. So right now it’s softball season with the full circle group.
And then I think it’s soccer next. And then he did basketball in the winter, especially Olympics is also just tremendous people involved with that. Great.
David Hirsch: Well, I’m wondering what role spirituality has played in your lives.
Sean Farrell: Um, huge. We’ve spoke a little while ago about priorities and kind of driving through some hard times, or really just kind of, you know, having life arranged for the right things.
And, you know, I’m a devout Catholic speaking for me personally. I think that as long as I have my priorities in order. And for me, that’s God first followed by my wife, followed by the children’s followed by my job and everything else. But as long as the priorities are set, right then life just tends to flow and things kind of come eat almost easy and naturally, but the minute that I get something out of order, it’s the minute that I put job before kids or four kids before mother, I think the worst thing I could do for my boys is put them, you know, more important than their mother.
That’s certainly anything before, before faith, then it doesn’t matter how hard I work. Things just, they just aren’t going to work. No amount of effort can make it happen. So I think keeping that sense of priorities matters and what ultimately matters is what life is about and the meaning of life. Uh, and the more that I keep that in mind they use your things are
David Hirsch: well-stated.
So I’m thinking about advice now, and I’m wondering what are some of the more important takeaways that come to mind regarding raising a child or. Children with
Sean Farrell: differences. I think one is a sense of possibilities. I think all around you. You’re going to hear people who are going to talk about some limitations and, uh, I think you want to be realistic about that, but I think part of our role as parents is to push and push and push because we don’t know.
Speaking about Sam specifically, you know, I don’t know what his ceiling is going to be. I think, you know, there’s lots of kids with down syndrome who go to college, who are performing all kinds of jobs and activities and tasks. And we’re only now discovering all the things that people with down syndrome are able to do because only now are they really allowed to do things, things, you know, I want to be realistic as well.
Sam’s not able to speak. He use a sign language he can hear and comprehend. Perfectly, but he just he’s unable to speak, but he’s kind of a couple thousand word sign, signing vocabulary for him. That’s going to provide some limitations that we need to help him to overcome. So back to your question about advice I might give, as I think.
Provide them everything that you possibly can just like you would any other child with all the tools that they need to really find out, you know, how far that they can go and then be open to that at the same time. I think having children with special needs, we do have a special obligation to make sure that we’re providing for their welfare and their future.
And to be realistic about. You know, there’s gonna come a day when I’m not around anymore. What’s that going to mean for Sam? I want him to be, to be provided for, and I don’t want that just to be in, you know, an obligation that falls to Sam’s brother, cause I wouldn’t be fair to Josh. So it’s a combination.
I think be optimistic, give them as much as we can, but at the same time also make sure that they are provided for when that day comes it to get hit by a bus. And you’re not there anymore. I think those are the two pieces of advice that, uh, that I’ve benefited from. And I think that’s what comes to mind first.
David Hirsch: Yeah. Well, thank you for sharing. So I’m wondering if there’s any advice you can share with parents, raising a child with challenges to help reach their full potential.
Sean Farrell: I think it’s getting easier to find resources that are available out there, but it’s not always super easy. So I think getting engaged as much as you can with the organizations and with the people that are in the area know about programs, like some of the programs that we’ve mentioned before.
You know, I rave about GGS. A lot of people in the area don’t know that it’s there and all the other can offer. So know, what’s there find out what your children’s rights are as far as the education system. And I’ll make sure that you’re highly involved in IEP meetings and, you know, be a team with the schools and also just kind of know everything that your child is entitled to.
And my son has greatly benefited since he’s got a sign language interpreter in the class so that other people know what he’s doing. So those kinds of resources do you want to make sure that you’re pushing for and getting, cause that can help so much. I think while you’re doing that, have a sense of a partnership about IEP meetings with the school.
I think that goes better than a combative stance that I have seen some other parents struggle through because I think they also want to do what’s best, but just sort of know their rights, but be their advocate. And then, you know, it gives them the freedom, I think, to find their own way and their own preferences.
And sometimes people down syndrome are called angels and sometimes they’re called innocence. Things like that. That’s just, that’s flatly, not true. It’s a sweet sentiment, but Sam has a full human being in every sense of the word, these clever, and you get somebody, he gets devilish and cranky and defiant and all those kinds of things like any other child.
So he is a full human being who needs, you know, instruction and faith and instruction and, and right and wrong. And. Good better and best and, and all those kinds of things. So don’t forget. This is not a, it’s not an angel who just living in your house for awhile. It’s a person who needs development in every single way.
We don’t do them any favors by kind of setting them aside as something that’s different in species, fully human, completely human. So he needs everything, therapeutic development and everything else. Anyway, those are the first thoughts that come to mind.
David Hirsch: Great advice. Thank you. So I’m wondering, why did you agree to be a mentor father as part of the special fathers
Sean Farrell: network?
Well, David, we touched on it a little bit earlier with some of the advice that I had heard and remembered, you know, for better or for worse, the fact that Sam’s mom and her mental health challenges have gift kind of given me some specific years of trial that we’ve had to get through. I think that gives me a little bit of perspective and some advice that I might be able to offer as, as somebody who’s finding themselves in a similar situation, I’m just eager for a chance to give back and.
You know, a lot of this is just that sense of priorities. Again, you know, if our faith comes first, what’s ultimately right. Comes first, then I want to make sure that, um, you know, giving us better than receiving. So, so I’m grateful to people like you are giving an opportunity and a channel to do that because it’s hard for dads and these communities to connect.
We tend to get a little isolated sometimes, and we tend to not like some of the community events that our wives like. So any chance to kind of make that connection to a dad who may be shy about participating in a. You know, a GTS play event or something like that. I’m eager to find chances to do that.
David Hirsch: Well, we’re so thrilled to have you. Thank you. Let’s give a special shout out to our mutual friend, John Kelly for helping bring us together.
Sean Farrell: Great guy, John I’m grateful. And we, John and I met at the gym and we just happened to be talking and he kind of took an interest in us. And of course he knows you and made the connection and I’m glad he did.
David Hirsch: So is there anything else you’d like to say before we wrap up
Sean Farrell: one thing that I would like to pass along? And part of this comes because professionally I’m part of laboratories. And although my lab today doesn’t do prenatal testing. I have worked with labs before that did, and I know that the reality is when people get certain prenatal tests.
And the reality is that sometimes people choose not to proceed with a pregnancy where the child has down syndrome and what I want. Physicians to know families, to know anybody who is thinking about this is that the life of the child with down syndrome is, is extraordinary. It’s wonderful. You know, we talked before about just the levels of happiness and the benefits to siblings, but I also think it’s part of just what is important about life itself.
When you have a child with special needs, I think it snaps you immediately past some of the myths that kind of tend to distract us when you think of what kind of life do I want? Well, I want to sit on the beach with a pina colada and what things that are easy, but life’s at ease or not really what’s happy, does not lives of wisdom.
So I think it came up in an earlier conversation. I, I believe that if you want to be physically strong, then you push around heavy stuff. If you want to be intellectually sharp, then you have to wrestle with some heavy books and tackle that. And it involves work. And I think for a life of happiness and wisdom and character and joy.
I think that only comes from tackling some things that are a bit more challenging and from not trying to pursue our idea of, of a life of ease and a life of vacation. And one thing about having a child with special needs is you’re not going to look like just the everyday normal, perfect family. And it’s on a cover of a magazine all the time.
It is a life that’s a little bit messy, sometimes a little bit earthy, a little bit grubby a little bit. Um, then there’s no doubt that there’s times that it’s more work. And I think so that, that. Leads very, very quickly to a healthy perspective on what matters, what doesn’t matter. And I think it’s no surprise to me that so many of these families, we have somebody with special needs, our families who have a sense of, um, what matters and what doesn’t matter.
And I think for anybody who may be wondering about what they’ll do with their child with down syndrome and what that means. I think because I’m a lab guy, I have a special obligation to make sure that everybody knows that this is not a bad diagnosis and it’s not a bad thing. You know, if you know that you’re going to be going to the gym every day for the next year, you know, that you’re familiar, you’re going to be stronger than today.
Well, if you know that you’re going to have a child with special needs down the road, it is going to lead you to a place that I think is so much healthier, happier, stronger, potentially could, uh, you know, a life that is a little bit more challenging is better. I, I am grateful. And as that nurse said, once upon a time looking back now, I wouldn’t change a thing.
David Hirsch: you’re living testimony. Thank you for sharing. So if somebody wants to get ahold of you, how would they go about doing that?
Sean Farrell: Well, my email address is Sean dot Pharell at RDX bio-science dot com. That’s probably the easiest way to reach me. And I’m glad to be helpful, uh, in any way that I can, you know, if I’ve got words of wisdom, that’s great.
If I’m just, you know, I can just listen for a while as well, so glad to help, however
David Hirsch: I can. Sean, thank you for taking the time in many insights as reminders. Sean is just one of the dads who 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 to your own. Please go to 21stcenturydads.org. Also, please support the special fathers network with the charitable donation of the 21st Century Dad’s foundation. Sean. Thanks again.
Sean Farrell: Thank you, David.
Tom Couch: And thank you for listening to the dad to dad podcast, to find out more about Gigi’s Playhouse, go to gigsplayhouse.org, or you can listen to David Hirsch’s conversation with GGS Playhouse, cofounder Paul Gianni on the data dad podcast. Number six. The dad to dad podcast is produced by Couch Audio for the Special Fathers Network.
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 kids connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers, to find out more, go to 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help. Or we’d like to offer help. We’d be honored to have you join our closed Facebook group. Please go to facebook.com groups and search dad to dad.
Tom Couch: If you enjoy our podcast, be sure to like us on Facebook and subscribe on iTunes or wherever you listen to your podcast.
I’m Tom Couch. Thanks for listening.