On this Special Fathers Network Dad to Dad podcast, Host David Hirsch speaks with special father John Kimec, principal of St. John De Sales, a Catholic High School in Chicago, Illinois. John and his wife Lindsay have five children including Michael who has Pierpont Syndrome and is non-verbal. John and host David Hirsch will talk about the challenges and joys of raising a son with special needs on this Dad to Dad podcast presented by The Special Fathers Network. To find out about the work being done on Pierpont Syndrome go to https://www.ncbi.nlm.nih.gov/pmc/articles/PMC4495254.
John Kimec: [00:00:00] That’s our Michael in a nutshell. He’s seven now and functions like he’s about a year old. He has a hard time swallowing, but he’s just the happiest fella that you would ever meet and has enriched our lives in ways that I don’t think I could cram into an hour. It’s been a real blessing.
Tom Couch: That’s Special Father John Kimec, principal of St. John de Sales Catholic High School in Chicago, Illinois. John and his wife Lindsay, have five children, including Michael, who has Pierpont syndrome and is nonverbal. John and host David Hirsch will talk about the challenges and joys of raising a son with special needs 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 children [00:01:00] connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. 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: And now let’s listen in on this fascinating conversation between Special Father John Kimec and David Hirsch.
David Hirsch: I am thrilled to be talking today with John Kimec of Homewood, Illinois who is a father of five and principal of St. John de Sales, a Catholic high school in Chicago. John, thank you for taking the time to do a podcast interview for the Special Fathers Network.
John Kimec: My pleasure. Thank you, David.
David Hirsch: You and your wife Lindsay have been married for 12 years and are the proud parents of five children: Mathis 11, Lanny 9, Adele 4, Joseph 19 months, and Michael who is seven and has Pierpont Syndrome, a rare [00:02:00] subcutaneous tissue disorder characterized by axial hypotonia after birth, prolonged feeding difficulties, and moderate to severe global developmental delays among other conditions. Let’s start with where you grew up. Tell me something about your family.
John Kimec: Sure. I grew up in the western suburbs, in Elmhurst, about 20 miles outside of the city. I have a younger sister and both of us were adopted. So I was only a month old when I was adopted. I know very little about my birth parents other than they weren’t married. And my birth mother, I believe, was 17 when she had me and knew right away that she wasn’t gonna be able to raise children. As I understand the story I believe I spent about a month or so in foster care. And my mother and father, who were in their early to mid thirties when I came along, had wanted children but weren’t able to conceive, weren’t able to have kids. And so they worked through Catholic Charities and we met, [00:03:00] so to speak, at St. Raymond’s Cathedral where I was baptized and then they took me home. And a very similar process for my younger sister too, who was two years younger than me.
David Hirsch: And is she a biological sister of yours or she was another adopted child from a different family?
John Kimec: We’re not biologically related. Her situation… different parents altogether.
David Hirsch: Okay. And your parents’ names are?
John Kimec: Jack and Diane. Just like the song.
David Hirsch: [chuckles] So it sounds like you might have had a questionable entrance into the world just because of your birth parents giving you up for adoption. But it sounds like without too much delay, within the first couple months going through foster care or whatever the program was, that you ended up in Jack and Diane’s family in Elmhurst.
John Kimec: Correct. Yeah. Had they not told me, and it was something they were always very clear about. They never tried to hide it. I didn’t find out by finding a certificate in their room when I was in high school or something.
David Hirsch: [laughing]
John Kimec: They were always really clear. I remember when I was very young, they would say, [00:04:00] you didn’t come from mommy’s tummy, as mom would put it. And then they gradually would just talk about it at a more age-appropriate level as time went on. So it was never something that really was surprising or bothered me. Or truth be told, I really just don’t… It’s not that I don’t care, I don’t wonder much about birth parents and things like that. I would say that, growing up, had they never told me I would’ve never known or suspected it or anything. It always felt and still does feel like home.
David Hirsch: Okay. That’s wonderful. They sound like special people and as I recall from a prior conversation your dad is still alive. Jack is still alive.
John Kimec: Yes. Mom and Dad are both still living. They’re in their late seventies now. My father has since retired. He spends a lot of time caring for my mother who is wheelchair-bound with MS.
David Hirsch: Oh, wow.
John Kimec: Yeah.
David Hirsch: And what did your dad do for a living?
John Kimec: He was an electrical engineer, so I remember two or three different places at which he worked. He was for a long time at GTE. [00:05:00] 25 years or plus. He was a supervisor there for a while and then moved on after they merged I believe with AT&T. Spent a short time at a couple of jobs at small companies that didn’t work out and then did the back balance of his career with a company called Mentor Graphics in Schaumburg, where he did really well. He traveled a lot and didn’t like it. But he liked the work and he worked very hard and was pretty successful.
David Hirsch: That’s fabulous. Sorry to hear about your mom and the condition of the situation she’s in. I have a little family experience with MS. My grandmother on my dad’s side only lived to her fifties because she was stricken with MS at a relatively early age.
John Kimec: Oh goodness.
David Hirsch: It must have been, I’m trying to do the math ’cause I haven’t thought about this recently. They immigrated to the United States in 1938 and she died in 1962. So yeah, she couldn’t have been much more than 55. But it’s just one of those things, right? You can’t plan or predict and it’s nice that your dad could be there [00:06:00] for your mom.
John Kimec: Absolutely.
David Hirsch: How would you describe your relationship with your dad?
John Kimec: My father is a really friendly guy, so he’s really easy to get along with. I would say that our relationship has always been steady and consistent even during my adolescent years where I wouldn’t say I really went off the deep end, so to speak, but I know I had moments where I was very difficult.
David Hirsch: [chuckling]
John Kimec: He just was really constant. Not much ruffled him. And so as I got older and transitioned from being a child, going to college and starting a family of my own, he was just very patient and always available to talk through issues, troubleshoot or whatever and would give very sound, very sound advice. It’s a relationship that I’ve always valued and treasured.
David Hirsch: That’s wonderful. You didn’t use the word consistent, but that’s what comes to mind. And it’s not always that way, so it’s very fortunate. Are there any important takeaways that come to mind when you think about your dad, lessons learned or things that he always said that resonate with you?
John Kimec: Yeah. I [00:07:00] remember one instance. I’ll never forget it. And it goes along with a host of so many others. I made brief mention that after he was laid off from GTE after 25 or 26 years, and then he latched on with a smaller company and was then laid off from that company. He was very astute financially, so we never really felt it. So I was never nervous, but we were sitting on our porch one time, and I asked him, just is everything gonna be okay? Not out of a sense of fear, but more out of curiosity. He gave me just a very short one line that I relied on many times, and he said it, and he meant it from his bones. He said, “God will provide.” But he wasn’t one that sat around and just… He prayed, but he didn’t just leave it with that. He prayed as if it all depended on God and worked like it all depended on him. [David laughing] So even when he was out of work, I remember him putting in really long days. He would talk about the head hunters with whom he was going to meet. He was very hardworking with his career. And it was a great [00:08:00] example for me, not just with work, but with everything to put forth your very best effort.
David Hirsch: Yeah. What words of wisdom that you just shared. God will provide. And the sort of image that came to mind when you’d said, pray as if it depended on God, but work as if it depended on yourself. With those two things, how could you not succeed?
John Kimec: Precisely. Yeah.
David Hirsch: Yeah. That’s fabulous. Out of curiosity, any other men who served as father figures as a young man yourself or perhaps later in life?
John Kimec: Yeah, I had an uncle who married very late in life, my mother’s brother, and so he was around a lot prior to getting married when I was younger. Uncle Dan, who still is alive. He’ll turn 80, I wanna say, or 81 this February. I always thought the world of him and still do. Real funny guy. He took me to my first baseball game, much to my father’s displeasure. And my uncle was a north sider, my father a south sider [David laughing] and I became a Cub fan. So my father [00:09:00] still has not forgiven him for that. But no, I loved Uncle Dan.
And then there was a couple, there was a coach that comes to mind, too. His name was Rick Medema. I always wanted to play basketball and since you can’t see on the camera here, but I was not blessed with height. [David laughing] It was a bit of a pipe dream for me. But he was one coach who really believed in me and took me under his wing at a camp he ran every summer and I was fortunate enough to walk on to my team in college. So I was really proud to be able to tell him about that. He definitely played a big role in me just thinking that was even gonna be possible.
And then I had a teacher in high school, Jerry Lordon. Just a real gentle, but very commanding presence. A man of great integrity, to whom I would say after my parents I owe my career to. As a teacher, I modeled my classroom after him, was able to move up the ranks into administration, eventually become a principal, due absolutely to the Doc, to Jerry Lordon. And moving back to [00:10:00] Chicago, I was able to get together with him and tell him that. So I was really happy to have had that opportunity. He actually just retired from Fenwick High School where I went and made a tremendous impact there on tens of thousands of people.
David Hirsch: Yeah, I recognize the name Jerry Lordon.
John Kimec: Ah!
David Hirsch: In fact, I think he is been involved with the Illinois Fatherhood initiative because we’ve had Fenwick High School students participate in the essay contest.
John Kimec: That wouldn’t surprise me. Yeah.
David Hirsch: The world’s getting to be a smaller and smaller place every day. [Both chuckling] I think in a prior conversation you also mentioned your in-laws and your father-in-law, the role that he’s played.
John Kimec: So Dave, Lindsay’s father, is the father of seven and their youngest has Down syndrome. She just turned either 21 or 22 now which is hard to believe. And her name is Kyra and she’s working now and everything, still living with mom and dad and probably will do such. But my wife’s parents are very inspirational people, both of ’em in their own right. [00:11:00] Her mother is very accomplished. She was the chairperson for the Couple to Couple League, which is one of the largest organizations that promotes natural family planning. She was very involved in that for a long time. She was involved in a lot of other things that are escaping me right now, but a very inspirational woman. Her father is cut from the same cloth. He was an engineer at 3M, a big outfit in Minnesota, for over 40 years. He’s gonna retire in February and very faithful man. Really typifies the whole thing of, don’t do as I say, but do as I do. A man of very few words, but a man of incredible integrity.
And it shows in his children. But my wife is just a gem, and is her father’s daughter, I guess is the best way that I can put it. And just seeing the impact that he’s had on his own children and how they’ve all turned out[00:12:00] is by itself just really inspirational. And just the way that he did it to leading much, much more. He really is a servant leader, a very inspiring guy in his own right.
David Hirsch: Excellent. From what I remember, you went to college at St. Mary’s in Winona.
John Kimec: Correct.
David Hirsch: And you took a degree in psychology, and then you went to grad school at Winona State University and got a master’s in education. So where has your career taken you since then?
John Kimec: Yeah, I ended up getting the MA actually from St. Mary’s too in education.
David Hirsch: Oh, okay.
John Kimec: Yep. And then I taught for three years. One year at a really tiny, tiny school in a very small town in Wisconsin. Name of the town was Waumandee, had 80 people in the town. My first teaching job was at a pre-K through 8th school of 30 students. I had fifth, sixth, and eighth grade in one room and I had seven students.
David Hirsch: Wow!
John Kimec: And I didn’t accidentally skip seventh grade. We didn’t have any seventh graders that [00:13:00] year.
David Hirsch: Oh my god.
John Kimec: True story: We had to close school one day at that place. This is in the year 2003, I want to say, because the conveyor belt that brought the coal from the chute to the furnace broke down. So this place was frozen in time. That school is still going. It was just amazing. St. Bonafice Elementary in Paris. The Paris Cemetery was on the grounds. Civil War veterans were buried there. It’s just a fascinating place. I did my student teaching there and then I taught there for a year full-time. I was there three years total before I moved to the Minneapolis/St. Paul area, where I taught high school theology for two years, I want to say. Yeah, two years. Then I made the move into administration.
David Hirsch: And when did you get back to Chicago then?
John Kimec: We came back here in the summer of 2015. That’s when I took the principal job here at St. Francis de Sales. And we had found some [00:14:00] healthcare here for our Michael, whom you mentioned with Pierpont syndrome, that we found to be really helpful for him. So we decided to make the move.
David Hirsch: Okay. So you’ve been a career educator. I think that’s a fair statement.
John Kimec: I have.
David Hirsch: Let’s talk about special needs first on a personal level and then perhaps beyond. Before Michael’s diagnosis, did you or Lindsay have any experience with special needs?
John Kimec: I didn’t really have any. Lindsay had a lot with her sister being born with Down syndrome. I don’t remember how old Lindsay was. I wanna say she was early teens I think when Kyra was born. And she speaks with very, very fond memories of growing up with Kyra. And I always found that to be really neat because it was despite a lot of hardships that took place too. She had some heart issues that are really consistent with children who were born with Down syndrome. So there was some surgeries and [00:15:00] just the shock of it all and so forth. But she recalls with great fondness carrying her around and dancing with her and reading to her and so forth. And Kyra always did and always will hold a very special place in Lindsay’s heart. So it was something that I really didn’t have. I had very little experience with it whereas Lindsay had a lot.
David Hirsch: It prompts the question, how did the two of you meet? Where did you meet?
John Kimec: So we met on the job. So when I moved from Wisconsin to St. Paul, I took a position at St. Agnes High School. I was there for a year. And then Lindsay actually graduated from the school. She wouldn’t want me to mention this, but she was valedictorian of her high school class. This could be probably a whole separate podcast, but she was in the military. She went to West Point and graduated and was commissioned. And then was medically discharged for lupus-like symptoms. So she was active duty for about a year and a half. And I bring that up in the context of that was what brought her back [00:16:00] to St. Paul. She was transferring out of the military and just wanted to come home, regroup, and then had the job offer at her alma mater. And that was where we met.
David Hirsch: Thanks for the clarification, because when you said that she was valedictorian of her high school class, I was thinking you wouldn’t have been teaching that class. That would’ve been… [both laughing]
John Kimec: Nope! No, I wasn’t.
David Hirsch: No. You erased that thought for bye-bye. So thank you for the clarification.
John Kimec: You bet.
David Hirsch: And it sounds… Whenever I hear that somebody went through one of the military academies, you mentioned West Point, it sends a different message about somebody. You are super disciplined, right? If you’ve gotten accepted to one of these military academies. And then the experience of going to and then graduating from, and then seeing active duty, right? It’s a life experience that you can’t compare to a lot of other things. You’ve shared an important insight about your wife and some of her background, so thank you for sharing. And one [00:17:00] thing we do have in common, it’s not a small thing. My wife was also the valedictorian of her high school class, which happens to be our high school class because we met when we were 16 years old.
John Kimec: Oh, how about it? Wow.
David Hirsch: I just have to share this funny story. We went back for something like our 20-year high school class reunion. And we had all five of our kids with us. The oldest would’ve been maybe 12 or 13 or something like that. And we walk into the school and there happens to be this plaque, the valedictorian plaque, and it’s got all the names of those that graduated from Barrington High School, going back to, I dunno, the 1920s or 1930s or something. And it lists the names of each of the valedictorians. And they’re looking for their mom’s name. And it’s surprising, they can’t find her name because the name that she goes by, Peggy Hirsch, is different than her maiden name, which is Margaret Owens. And they weren’t able to figure that out on their own. But probably the oldest one’s like, oh, I found it. Our middle name is Owens, her last name is Owens, here’s [00:18:00] mom’s name. So one of ’em, I can’t remember who, said, dad, where’s your name? And my impulsive response was, you know that there can only be one valedictorian. Your mom was the valedictorian. And if truth be known, I was about 300 or 400 people behind your mom. By the way, the class was over 700 people. And if you peeled that plate off like 300+ times, you would see my name too. So anyway…
John Kimec: We share that in common too David, that’s for sure. Yeah.
David Hirsch: Anyway, I thought that was a sort of a fun aside.
John Kimec: You bet.
David Hirsch: But back to the situation. Before Michael was diagnosed, it sounds like Lindsay had a lot of experience with special needs, maybe as a direct result of growing up with her sister Kyra, and you had more limited experience. What is Pierpont syndrome?
John Kimec: The best way that I can describe it I think would be as a cousin to autism. That’s often how I explain it. It’s a lot [00:19:00] of similar manifestations if you will. So our son is nonverbal which is common with children who have autism. And then there’s some rather significant developmental delays with him. So he’s seven years old. He functions more like he was maybe a little bit over a year; in some areas slightly more, in some slightly less. And he has some, I wouldn’t say pronounced necessarily, but some distinct physical features synonymous with Pierpont syndrome. So his hand, his fingers are a little on the stubbier side. His hands are on the chubbier side. There’s some unique facial features that somewhat I would say be consistent with children who have Down syndrome. And then he had some skull abnormalities that required surgery. His ability to swallow really comes and goes. More often than not, he can’t swallow. Things along those lines. He has some aggressive fits that come every now and again. But praise God, those have been going very [00:20:00] smoothly as of late. Pierpont syndrome is much more rare than is autism. There’s not as nearly as high of an instance of it. But like autism, it can take many different forms and manifestations. No two cases are alike, although there might be some similarities, that type of thing.
David Hirsch: You mentioned that he has difficulty swallowing. Does that present a problem with feeding, or how have you addressed that?
John Kimec: A majority of his food is tube fed.
David Hirsch: Oh, okay.
John Kimec: So really, whatever we have for dinner we blend up to a milkshake type consistency, and then he eats it through a tube that’s in his stomach.
David Hirsch: Okay.
John Kimec: When he was really young we had a drip feed that went 24/7. That transitioned to what was more I think they’re called like bolus feeds, where you eat more at once and then that gave way to the tube. It’s called a Mickey button that he presently has. Inexplicably, sometimes he [00:21:00] can swallow without too much difficulty. So once in a great while, he’ll sit down and eat a whole meal like you or I would. Sometimes he can take the blended food by mouth. And sometimes he’s just not having it. And it has to all be tube fed. But a vast majority of his sustenance – food and water, medicine, what have you – going through his tube.
David Hirsch: Okay. That obviously presents a certain amount of challenges, but thanks for clarifying that. I’m wondering looking back on the situation, how did Michael’s diagnosis transpire? When is it that you knew that there was something a bit different or that something was going on?
John Kimec: Sure. In hindsight, we probably should have known right away. He was the third of five children. His first month of life was… it wasn’t completely unlike our other children. He wasn’t really sleeping as good. So that was a little bit of a… it gave us some pause. And he would have these crying fits that even for[00:22:00] a newborn infant were quite alarming. And we didn’t find out until later that he was choking after having been breastfed. We just had no idea what was going on until he failed a swallow study and saw some similar manifestations in a hospital setting. It was like, oh, that’s what’s going on. But by and large, the first month of life, for all intents and purposes, was pretty normal.
We took a long road trip from the Twin Cities to Florida for my wife’s brother’s wedding, and we pulled up around midnight. Lindsey was nursing Michael. I was unloading the car and she just started screaming my name. John, come here! And Michael had come off from nursing and he turned purple. And she was holding him, if you can picture this, both hands underneath him, one on the small of his back and one on his head, and he was just laying there limp.
We thought we [00:23:00] lost him. We didn’t know what was going on. We don’t know how long that went on for. It felt like an eternity. It was probably like 30 or 45 seconds. I remember giving him mouth to mouth, just not knowing what to do. But one way or another amidst a frenzy, he came back to, so to speak.
After that day, to be honest, it’s a little bit of a blur, everything that happened. I know we were in the hospital system in Florida for a couple of weeks. And it was just a tricky experience trying to figure out what exactly was going on. We didn’t really get much figured out until we got back to the Twin Cities where it was a scenario we knew, and the Children’s Hospitals right by where we lived are nationally, if not internationally renowned.
And that’s where we started peeling back the onion, so to speak. Where he failed a swallow study, and we found out that he was aspirating everything. And then the feeding tubes got put in. And then we found out that he had a pretty significant skull [00:24:00] abnormality. He didn’t have a… I never heard of this before. He didn’t have a soft spot in his head, so his head was only growing from front to back. It wasn’t growing in width and rounding out. So at five months he had a very routine but very invasive surgery to go in and make the small spot. And that went fine. His head has grown just fine. We’ve always been suspicious of, does he still have some head pressure from it and so forth.
And then it was also in that whole process that we found out about the developmental delay. That he wasn’t going to progress as a normal child would. At that point we didn’t really know how much he was going to progress, and we just went one step at a time. And he was very slow to gain movement and so forth.
My wife found a therapy. The name of it escapes me, [00:25:00] but the premise of it was there was some exercises that a young person, anybody, could do to build the strength of the brain and to gain some basic motor movements. So we did those with him very religiously. Lindsay was home at the time, so she really championed that and spearheaded it. And he did end up gaining some movement. Around when he turned about a year, if I remember correctly, he started crawling and moving around. He got to the point… Behind the curve, it got to the point where he was walking and so forth.
There was a very brief time where he started to do some battling. But he lost that pretty quickly. We never did quite figure that out, what happened or where it went or whatever. But that’s how we found out. That’s our Michael, in a nutshell. He’s seven now and functions like he’s about a year old. He has a hard time swallowing, but he’s just the happiest fella that you would ever meet and has enriched our lives in ways that I don’t think I could cram into an hour. It’s been a real blessing.
David Hirsch: Yeah. That’s a remarkable story. Thank you for sharing. And if [00:26:00] I remember what you were saying, you drove down from Minneapolis or the Twin Cities down to Florida for this wedding. You get there and all of a sudden life takes a major turn. Did you actually make it to the wedding or not, given all the things that were going on?
John Kimec: By the skin of our teeth, but yeah we made it. If I remember correctly, I think the hospital staff was able to… he was in a stable enough place to where we were able to both sneak out for an hour.
David Hirsch: Oh, wow.
John Kimec: And Lindsay and I and the children made it to the wedding mass. And then after that, I believe she went back. And we had three children at the time, and our other two were very, very young. They were like three and a half and about to turn two. We had our daughter’s second birthday in the hospital that year.
David Hirsch: Yikes.
John Kimec: That was one that we’ll never forget. But yeah, we got to the wedding and I did my thing with the younger children. And then Lindsay did a lot more time in the [00:27:00] hospital. If she were here, she may have a totally different recollection of how it happened. It’s hard for me to remember all the details in order, but that was the gist of it.
David Hirsch: Yeah. You did say it was a bit of a blur. You know, life is so unpredictable at times. And I’m just thrilled to hear that they were able to stabilize him, get you back to Minnesota and that they were able to start the process of, like you said, I think using your own words, peeling back the onion to try to figure out, sort of situation by situation, what’s going on here? What is this? When was it actually diagnosed as Pierpont? It wasn’t like, oh, one of these symptoms. Oh, we know exactly what it is. How long did it take to go from those early experiences to actually getting the official diagnosis?
John Kimec: Pierpont came much later in the game. We spent some time at the Mayo Clinic and they initially called it autism. And it had a lot of the characteristics of autism, but they were clear that, look, [00:28:00] we’re not completely sure that this is what it is, but it’ll get the ball rolling for you. There was a doctor Pierpont who discovered the syndrome who worked out of the University of Minnesota, and it was after some sit downs with her that we were able to come out with that diagnosis. And that I believe was like 2014 or 2015, somewhere in there.
David Hirsch: So shortly before you moved to Chicago. Yeah. Wow. How old would he have been then?
John Kimec: He would’ve been just past three years old when we moved here.
David Hirsch: It sounds like you’ve been on quite a journey the last seven years, and then you went on to have more kids. It’s not like that seems to have slowed you down somehow.
John Kimec: Yeah, we had always wanted a bigger family, so it was something that we would really talk about and pray about if Michael was having some, for lack of a better term, more stable periods. There’s been a lot of crisis mode, but it hasn’t been all crisis [00:29:00] mode. We’ve definitely had our fair share of it, but who hasn’t? But yeah, we decided to keep going. It didn’t seem like it was something that should prevent us from still being able to, I don’t know, promulgate the gift of life, for lack of a better term. And it definitely has given our children some perspective on people who have disabilities, and all of the gifts that they can bring.
David Hirsch: Sure. So I’m wondering if there’s some meaningful advice that you received, either from the medical community or therapists that have helped you and Lindsay navigate the slippery slope.
John Kimec: That’s a great question. There’s no one-liner or anything that I can really think of, but I know that Lindsay and I decided that this is our normal and so this is the hand we’ve been dealt and we gotta play it. And no one ever told us that, but [00:30:00] that was definitely the example of her family. So to go back to a previous point about living a sermon and actions speaking louder than words. Lindsay’s family was by no means tethered because they had a child who had Down syndrome. And I think that’s where our inspiration came from, to make sure that we’re not gonna feel sorry for ourselves and put life on hold and so forth, or that we’re just gonna keep going and that this young fella is part of the family. So he’s been camping. He’s been to the beach. He’s been on boats now. You name it. He’s done all kinds of really neat things. There are seasons where those kind of things become very difficult, but it’s always been important for us to keep things moving.
David Hirsch: So it sounds like you’ve tried to just continue to do what you’d be doing regardless of what the circumstances and some of the challenges are raising a child with differences. Were there some important decisions in addition to that, that you’ve made raising a child with special needs?
John Kimec: Yeah. The decision to [00:31:00] move was a huge one. We never had envisioned ourselves moving, so that was a hard decision to make. We had really grown roots there, family, friends, you name it. But it was something that we thought we had to do for him. It hasn’t, full disclosure, panned out like we had hoped it would, but I would by no means say that it was a failure. It’s definitely enriched our family in a lot of different ways that we never expected. And there were things that we found that we had no idea that we were going to find. The school that he’s in, our Michael, is just second to none. We found a church community that embraced him and embraced our family despite his uh… You know when Michael’s at mass, that much I’ll say.
David Hirsch: Okay.
John Kimec: And the pastor there, Father Frank Phillips, was instrumental in him receiving his first communion, even like a couple years before it’s the normal age to do something like that. [00:32:00] So we have just been blessed by people who have… The best way that I can put it is that, through Michael, we’ve experienced great mercy and have truly seen the mercy of God the Father.
David Hirsch: Yeah. It sounds like it’s been a very enlivening experience. Like you said, you couldn’t have predicted or planned the path that you’d be on or all the things that you’ve encountered. And I don’t like to focus on the negative, but were there some particular challenges that you’ve encountered that, when you look back on call it the first seven years, that you can look back on and say, yeah, these were the inflection points, or these were the biggest challenges?
John Kimec: Yeah, there certainly has been challenges. His care can be really all encompassing at times. So Lindsay and I have commented that we’ve been married, we’ll be married 12 years this month, and [00:33:00] it’s almost as though we can break our family time, if you will, into two very distinct time periods: the time before Michael and the time after.
We always had our challenges, but life was pretty normal for lack of a better term. We could be as present to our children as we wanted to, as we needed to be, and we don’t always have that now. There are some really simple things that I took for granted prior to his birth and the care that he requires that we can’t always do now. Even something simple as like his feeding. Lindsay might want to be sitting down and just making baby faces and doing stuff with our little one, but Michael’s food has to be prepared and distributed, and diapers had to be changed on a seven year old, that kind of thing. If I wanted to take my oldest son to a ball game and be gone for five to six hours, that requires an incredible amount of planning for Michael to be home without two [00:34:00] people.
I guess in some of the darker moments, I have seen – and I don’t blame them for this one ounce – but even some like resentment from our older children at the time that they can’t always have. There definitely is just some exhaustion that sets in. I made brief mention of some violent fits that Michael would have, and those have dissipated, but he went through a year and a half period where he would go three or four days, a literal three or four days, with zero sleep.
David Hirsch: Wow.
John Kimec: And that’s starting to come under control now. But yeah, there’s been some very challenging and rather dark moments. Things that you can’t really prepare for. You don’t quite know how to handle, and it really forces you to take some, a very deep and very blind level of trust that we’ll do everything that we can. But in the end, this is out of our hands and in the hands of the Lord.
David Hirsch: Yeah, deep trust or faith that things are gonna be okay.
John Kimec: Right.
David Hirsch: So my heart reaches out to you [00:35:00] guys. Because like you had said, there was this experience that you can recall maybe with a distant memory now of what life was like and some of the things you just take for granted. You don’t even think about it. It’s like breathing. And the more recent experiences during the last six or seven years and some of the challenges that go along with that. One of the questions that came to mind because you’ve emphasized a couple times that Michael’s non-verbal. So is there a communications device that you’ve been able to utilize to help him communicate? Or how is it that you communicate with him or how does he communicate with others for that matter?
John Kimec: That’s also been happening in stages, if you will. You know, with him being our son, we’ve learned some of his nuances and so forth, and he definitely understands what we’re saying. So we can communicate in that regard.
But then there’s the matter of him communicating with us without any words. Lindsay and I have been to… I’ve been to one, she’s been to two. It is a system called POD. POD is an acronym.[00:36:00] What it stands for is escaping me. If you can picture this, it’s a very almost dictionary thick flip book. It’s got 16 pictures per page organized in a way that you can move between and among pages to put ideas and phrases and even sentences together. The best way I can describe it would be like a picture version of sign language. POD originated in Australia and the people at his school with whom he works have been trained in it also. And if you ask someone who is completely trained in this, they can flip through a book almost like… it’s so fast, it’s almost a cartoon. And they can communicate with it. And once the recipient, for lack of a better term, is exposed to it properly, which is why we have to be trained, they can use the picture system as their version of language.
So like today, the training that I was in, for example his therapist was reading a book with him, with the POD picture [00:37:00] book off to the side, and he was able to communicate with her about how he thought something was funny by touching the proper picture. So it’s a process. And whether you had children with special needs or not, there are things as parents that we learned that we never thought that we would. This is one of them.
David Hirsch: Yeah. It’s like you’re learning a new language. You’ve gotta learn a new way to communicate and it’s not based on the English alphabet.
John Kimec: That’s exactly what it’s, yeah.
David Hirsch: It sounds fascinating, but maybe daunting at the same time.
John Kimec: That’s a perfect way to encapsulate it. Yes.
David Hirsch: So you made reference to this. I’m curious to know what impact Michael’s situation’s had on his four siblings – I guess primarily the older ones who would be more knowledgeable or be able to express themselves – as well as the rest of your family, your extended family. What impact has he had on your family?
John Kimec: Having Michael in our lives has been tremendously enriching. It’s certainly not without challenges. Our older ones I think also remember life before and [00:38:00] after. On the challenging side is they’ve all had to grow up really fast. They have an understanding that there’s only so much of mom and dad to go around, and they understand that more than I think a nine and 11 year old could or should even have to. So I don’t think that they hold resentment towards mom and dad per se. But I know that you can see it in their face when you’re doing something with them and you have to go chase down Michael because he’s about to climb out a window or because his diaper is falling off, or there’s a whole host of other things. So there definitely is a sadness that I think is present sometimes, and we’re pretty open about it and we talk about it. For our younger two, because Michael was right in the middle, it’s really all they’ve ever known.
And all of them love their brother. They absolutely love their brother, and it’s given them just a perspective on people who have disabilities and [00:39:00] how to be patient with them. So if they’re ever around people who are like that it doesn’t phase them. I think they’ve been really good with people and very patient. He never really phased my wife’s family because they themselves had raised a child with special needs. So it was something that they very readily embraced and were very good to him. And I would say that my parents are good with him too. Their interactions are different in as much as they really don’t have any experience with children who have special needs, but they certainly are loving towards him in their own way.
And what also has been really… I know I described some of the darker moments and so forth. But nine times outta 10, Michael is a really happy guy, and he can actually be the life of the party sometimes. It’s not uncommon for him to just go into the middle of a room and jump up and down and slap his legs and start laughing, and then he puts a tremendous smile on people’s faces.
Sometimes, like he has a very innate sense if someone is struggling. [00:40:00] I can share this story with you. We had a bunch of friends over, and we ended the night in prayer. And he walked past a lady who was sitting right next to me and he walked up and he just looked at her and smiled and patted her on the knee, and then he walked away. So it was a seemingly amusing, innocuous interaction. But she shared with us the next day that she was at a really low point. And she said that boy knew that I was struggling, and he knew that all I needed was a smile and an affirmation and he gave it to me. So little things like that. I think we must never assume or take for granted the disabled ’cause they know as much, or in some cases a lot more speaking for myself than I ever will.
David Hirsch: Yeah. I wonder if in part, John, it’s when somebody has a loss of certain senses, like [00:41:00] sight or hearing or touch, the other senses become more enlivened, right? To compensate. And I wonder if some of the challenges that Michael’s faced have enlivened or given him a better understanding. Like we would call it an intuition or something that’s imperceptible, and I’m wondering if that’s part of what’s at play here.
John Kimec: I think that’s a great point. Yeah. I think you’re right.
David Hirsch: Yeah. It’s fascinating. Thank you for sharing. It’s not been a straight line. Life is not a straight line. It doesn’t have to do with special needs, it’s just that’s life. And I want to talk about supporting organizations to make sure that we acknowledge the organizations that have played an important role. I think you made reference in passing in today’s conversation, but specifically in a prior conversation that the school he’s at, Elim Therapeutic Day School, has played an instrumental role in his development.
John Kimec: Elim has been just wonderful. The people that are there are there very, very intentionally. They’re not [00:42:00] just collecting a paycheck. They are all in to the development of all these folks who are differently abled, so to speak. That’s from the principal to the secretary, to his teachers, to his aide. It’s everybody. They have just been fantastic and they’ve been just a constant for us because they’ve been there through thick and thin. They’ve seen him at his best and they’ve seen him at his worst. And they embrace him no matter what. They take his care and education very seriously. And they firmly believe that he can learn and grow at his own level. They’ve just been a godsend. And I think Elim actually, it’s from the Book of Exodus, and I think it was the oasis in the desert when the Israelites were wandering. So it’s very appropriately named.
David Hirsch: It sounds like it. I’ve had other dads in the network mention that their sons or daughters have been there, and they also sing the praises of the individuals there. It’s a very unique [00:43:00] environment and very nurturing and enriching environment. So thank you for sharing. Any other organizations or individuals that have played an instrumental role in your family’s life or Michael’s development?
John Kimec: I think we have received blessings in many, many, many times over from an organization called the Crash Foundation. At one point, Michael wrecked a good portion of our house. I’ll spare you the details. We had to tear up carpeting and all this kind of stuff and we had to embark on a remodeling process, which has been very, very long. But the Crash Foundation donates labor and materials to support families and children with special needs in keeping their homes up kept. But suffice it to say it has been a foundation that has supported us in upkeeping and renovating our home to get it to where it needs to be for our son and for our entire family. The blessings [00:44:00] that we received from them are… I don’t even know where to start to talk about how they’ve blessed our family.
David Hirsch: Yeah. You can’t predict those things. It’s like your faith is allowing you to do things, maybe not on your own. There’s these resources that are put in your path that you can only look back and say, thank God.
John Kimec: Precisely. And I’m sure that there’s things and people that I am missing too. But just around every turn, we’ve been very, very blessed in some very surprising and unpredictable ways. And it’s something that Lindsay and I talk about a lot. Just the very grave responsibility that we have to then in turn be there for others, for how much people have been there for us.
David Hirsch: It’s a journey.
John Kimec: Yeah. Yeah.
David Hirsch: Do I remember you telling me in a prior conversation that Lindsay is homeschooling your kiddos?
John Kimec: Yes, that’s correct.
David Hirsch: Wow. Her pedestal got [00:45:00] notched up another level or two.
John Kimec: Yes.
David Hirsch: I don’t know how people do that, honestly.
John Kimec: We never thought we would homeschool, but it just seemed like the right thing to do. To be able to drive the bus on curriculum, on scheduling too, because our schedule has to be fluid and drop things at a moment’s notice and that kind of thing. So it definitely has its challenges, but for our family, at least for now, it definitely is the right thing to do. And it’s something that our children really look forward to. They love getting started on their work every day. They really appreciate the time with mom. It allows us even just to give like the chance for rest proper to young kids that age and not have to run ’em into the ground and get ’em all exhausted and so forth. It allows us to put a great emphasis on our faith just because that’s something we don’t want ever want the children to lose.
David Hirsch: Okay. I’ll just take your word for it, not being knowledgeable or insightful about homeschooling. But again, I think it takes a special family, [00:46:00] specifically a special person, typically the mom, who is taking the lead on doing those things. And like I said Lindsay’s pedestal has gotten notched up a little bit higher.
I’m thinking about advice and I’m wondering if there’s any important takeaways that come to mind beyond our conversation here that you’d want to share about raising a child with differences.
John Kimec: [long heavy sigh] My advice, David, is I’m not the person who should be giving advice. But if asked, I guess thinking about it from the role of the father I can speak most of all from the mistakes I’ve made. And I just know that anytime that I’ve put family ahead of anything else, even if it seems counterintuitive, it’s always the right thing to do. Any mistakes that I’ve made have been putting up work or whatever else before the needs of the family. Whenever the needs of the family are first, [00:47:00] everything else will fall into place.
David Hirsch: Keep it simple. I like it. So I’m curious to know why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?
John Kimec: I think it’s a matter of… To your point earlier about whether there’s a child with special needs involved or not, the family is not a straight line. And I think the worst thing that somebody could feel in any challenging situation is isolated. And anything that I could do to help somebody not feel that way I would like to be able to do it.
David Hirsch: We’re thrilled to have you. Thank you for being involved as a mentor father. And I realized, or it’s not lost on me, that Michael’s only seven and you’re volunteering to help somebody else that might have a younger child with a similar situation to your own. When in reality, you have so many years ahead of you, of fathering. For God’s sakes, you’ve only been a dad for 11 years. And I say that with all due respect.
John Kimec: Of course. Of course.
David Hirsch: I think that you may [00:48:00] be one of those guys in the middle, somebody who stepped up to be a mentor father because you do have some experience, but in reality you may be the benefactor of developing a relationship or relationships with some of the other more seasoned dads in the network. And maybe it’s not Pierpont syndrome experiences that others have had with similar challenges as it relates to a child who is nonverbal, who has autism, who might have feeding issues as well. So the circumstances, the fact pattern, doesn’t have to be identical. How do they handle the situation, right? You have a large family. There’s other guys that are raising kids with three and five and seven… one of the guys has 10 kids, six of which have special needs. How could you not pick up a thing or two? Oh, by the way, his wife Jennifer also homeschools their kids as well. I’m like, oh my gosh. So I’ve got a couple of really good introductions to make to you as well. Thank you again for being part of the network. Let’s also give a special shout out to Tom Zbierski at Big Shoulders Fund for [00:49:00] introducing us.
John Kimec: Absolutely. Absolutely.
David Hirsch: Yeah, Big Shoulders does some amazing work around the Chicago area and beyond.
John Kimec: We’re actually, our school is the recipient of an operating grant from the Big Shoulders Fund. So I’ve had the pleasure to work with Tom for my entire five years here, and there’s folks from BSF who are in our school every single week, and they offer invaluable support and their mission is as inspiring as they come. They’re simply wonderful.
David Hirsch: Yep. So is there anything else you’d like to say before we wrap up?
John Kimec: I love what you said about me being in the middle. And it’s an honor and a pleasure to be a mentor father, and I most certainly would benefit from the wisdom of those who have done this, be it longer or shorter than I have. And I think I will, I know that I will also myself benefit from being a part of this network. So David, I thank you for the opportunity.
David Hirsch: You’re welcome. So if somebody wants to learn more about Pierpont [00:50:00] syndrome, Big Shoulders Fund or contact you, how would they go about doing that?
John Kimec: How about I throw out some websites and emails there?
David Hirsch: Sure.
John Kimec: I’d be happy to personally connect with anybody at JKimec@sfdshs.org.
David Hirsch: Okay.
John Kimec: And people can learn more about the Big Shoulders Fund at their website, which is BigShouldersFund.org.
David Hirsch: Okay.
John Kimec: And there’s not a ton of information out there about Pierpont syndrome. It really is still developing.
David Hirsch: We’ll just find the information on Dr. Pierpont and maybe include that in the show notes.
John Kimec: Very good.
David Hirsch: John, thank you for [00:51:00] taking the time and many insights. As a reminder, John is just one of the dads who’s agreed to be a mentor father as part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stCenturyDads.org.
Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501c3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Please consider making a tax-deductible donation today. I would really appreciate your support. You can also post a review on iTunes, share the podcast with family and friends, and subscribe so you’ll get a reminder when each new episode is produced. John, thanks again.
John Kimec: Thank you, sir. My pleasure.
Tom Couch: And thank you for listening to the Dad to Dad [00:52:00] Podcast presented by 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 children connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers. 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: If you enjoyed this podcast, please be sure to like us on Facebook and subscribe on iTunes or wherever you listen. The Dad to Dad Podcast is produced by Couch Audio for the Special Fathers Network.
Thanks for listening.