087 – Juan Vagilenty Has Two Children with Special Needs: Pallister-Kallian & Down Syndrome
On this Special Fathers Network Dad to Dad podcast, host David Hirsch speaks with special Father Juan Vagilenty, a lawyer from Chicago. Juan and wife Anna, have two children with special needs. Amelia, age 9, has Pallister-Killian Mosaic Syndrome, or PKS and Max, age 7, has Down Syndrome. We’ll hear the Vagilenty family story and how religion has been an important part of their life.
Dad to Dad 87 – Juan Vagilenty Has Two Children with Special Needs: Pallister-Kallian & Down Syndrome
Juan Vagilenty: But I just want to mention one thing that, um, sister Rosemary thought powerhouse behind mr. Cornea said, once to us, you guys are special because if Christ went and knocked on your door and told you, I want you to take care of this child, most people would say, get outta here. And you would say it, but he and your they’re virtually that you would accept a child and you were the right person to raise this child. And just hearing that. Well, it’s like, wow, that was like that like summarized. How would we thought it’s like, you know why us? And sometimes that’s how we feel it. Like, cause maybe we were the right people for these kids.
That’s special father, Juan Vagilenty, a lawyer from Chicago who, along with his wife, Anna has two children with special needs.
We’ll hear Juan and Anna’s story and how religion has really been an important part of their life. That’s all on this dad to dad podcast presented by the Special Fathers Network. Here’s your 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.
Juan Vagilenty: 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 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.
Juan Vagilenty: And now let’s listen in as special father Juan Vagilenty speaks to David Hirsch.
David Hirsch: I’m thrilled to be talking today with Juan Vagilenty of Chicago, who is a father of two and a real estate attorney, Juan, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Juan Vagilenty: Thank you, David.
David Hirsch: You and your wife, Anna. I’ve been married for 15 years and the proud parents of daughter Amelia nine and son max seven, who both have special needs.
Let’s start with some background. Where did you grow up? Tell me something about your family.
Juan Vagilenty: Uh, I grew up on the near North side of Chicago, actually the humble park neighborhood. We lived there until I went to college. So until 1991, and I went to school down in state in Urbana champagne, and I came back to Chicago and I went to law school at John Marshall while working, and then, uh, well at school, my father and brother would make fun of me that I liked it.
It was stay home on the weekends. So I have two brothers, so this brother was single and he, um, he would go out. So he invited me a couple of times and my dad too. Cause my, my dad’s he’s been remarried, but he’s been, but, uh, I would not dance. So they, one day a friend of mine told me how he had signed up for dance classes.
And, uh, he, uh, recommended that I take some with him and I said, no, but yeah, brother and sister and my dad said they pay for the classes. And is this talking at night, we’re just joking around with each other. So they signed me up and that’s how I met my wife. And unfortunately for my, my family, I met her and they were complaining now that I wasn’t spending too much time at home.
I was more spending more time with my wife future-wise so it worked out so everybody’s happy.
David Hirsch: Excellent. Well, thanks for the quick flyby. I’d like to go back a little bit, because I remember in a prior conversation, you told me that you had. Six siblings and two half siblings. So there were nine of you.
Juan Vagilenty: Yeah, so, so I come from a big family. Um, so I’m the youngest male. I have, um, one older sister who, um, who was older, old, who’s the oldest of a group. And then I have two older brothers or who are twins. And I have a sister who’s one year older than me and I have two half sisters from my dad’s second marriage.
So yeah, we’re a big group.
David Hirsch: Yeah, it sounds like a lot of, uh, siblings to be growing up with. You mentioned that your mom passed away, your dad who’s still alive, was remarried. And what does your dad do for a living? You know, trying to support this large family of yours.
Juan Vagilenty: He was a Pressman. He used to run the printing machines would print bags for like the table chips.
Their clients were like Jay’s potato chips, candies tool, Bracks, candies, the bags, they would print those bags out. So he ran the machines, he voted up them up with paint and he worked a lot hours back then when they were making them here in Chicago, every guy at UT he was working a lot. So we hardly saw him.
But when we did see him, you know, and he had us working, he owned a couple of properties in the, uh, humble park in, in a Wicker park area. So he always had us working during our summer breaks. And he kept us in line, you know, at that time I didn’t think about it, but I would see my friends playing and your summer and that, you know, having the time to go play and do things, but, and I was with my brothers and my dad worked out in the building and they would ask me why I don’t go hang out with Tom.
I said, well, my dad wants me to work on this and that. And so, but now, now that I look back on it, it was good. Cause he kept us busy and he kept us out of trouble. Which is when you’re young, you need that.
David Hirsch: Absolutely. In fact, it sounds like, uh, you didn’t come out and say it, but it just sounds evident that your dad had a very good work ethic.
Juan Vagilenty: Yeah.
David Hirsch: It sounds like you somewhat followed in your dad’s footsteps because it sounds like you’re very focused on what you’re doing, whether it was studying or whatever you’re involved with. And I’m wondering if there’s any other positive attributes that your dad passed along to you.
Juan Vagilenty: He did, uh, in his own way, he did the best he could.
Um, to be honest, you, he just had a great education, but, um, what he knew is that he had to work hard to give his kids a better future. So that’s what he did. He worked a lot, but I do remember that even though, you know, he just had a great education. He did like taking us to things, to open our minds to the world around us, the museum, the lakefront.
Losing movies about historical figures. He was a big baseball fan. He still is, but yeah. And anything to talk politics. Yeah. Yeah. He was a good dad.
David Hirsch: Excellent. Well, not everybody has a strong relationship or a strong role model like you have. So that’s a, that’s a blessing. I’m wondering, how would you characterize your relationship with your dad?
Juan Vagilenty: When I was younger, it was like, I, I kind of feared them. I respect them. I loved him, but now he’s older. It’s more like a friendship, like a peer. It’s funny. Cause um, when I see my son looking at me and my wife tells me that he looks at me like I’m some kind of guy like, and that I have faults and have weaknesses and I don’t know everything.
And the funny thing is that. I see that in my son. And up to this point, I did a couple of years ago, I was asking him how you do this. I had to fix something around the house and he calls, you know, why look online? He, cause I asked him why, why don’t, you know, he goes, don’t, you know, I don’t know everything.
And it hit me. It hit me. You know, I still think that, you know, sometimes, you know, he knows all the answers when it comes to certain things and not. And it’s funny because I see that in my son, in dealing with him and I could see that yeah. Desires and my wife tells me that. And I just think it’s, it’s, it’s kind of funny how some children think about that too.
For me, it just hit me a couple of years ago at, you know, my dad is human and, you know, annual here, assuming he has an imperfections, but yeah, you just, when you’re young, sometimes it’s a good thing. Sometimes when you feel that, you know, you’re secure that your father. You know, have some answers for you or you can look to him for guidance.
David Hirsch: That’s fabulous. Well, um, I know a little bit about what kids think of their dads because through the Illinois fatherhood initiative we’ve had, I’m not exaggerating well over 425,000 kids write essays to the theme. What my father means to me and the little kids, the first grader, second grade, third grade, fourth grade.
Um, many of them talk about their dad being like a superhero. Somebody who’s bigger than life. Somebody who, you know, sort of invincible and, you know, you have to remember that when you’re super young, you know, your dad is like two or three times your size, right. So, I mean, He is much larger than you. Um, so from a perspective standpoint, you know, things change as you get older and you know, you’re an adult yourself, and now you look at your dad, not so much from that low vantage point looking up, but more of an eye to eye type of experience.
And, you know, you realize that, uh, you know, people do the best they can with whatever. Uh, resources they have. And, you know, thank you for mentioning that, you know, had a lot of accomplishments in his life and raising a big family and, you know, on a third grade education, right. That’s almost unheard of today, right.
You know, how many people could survive in today’s culture or environment, you know, with a third grade education. So he sounds like a, a very, uh, strong willed person and somebody who. You know, um, has had a pick himself up by the bootstraps based on his own life experience out of curiosity. Were there any other father figures growing up men that had played an into lunch or role in your life?
In addition to your dad,
Juan Vagilenty: older brother, he kind of helped me learn the ropes when I went to high school. And I remember before going to high school, He would make me run in the morning. It would make me get up like in the morning, like around five 30 to go running. And I didn’t want to go at that time, but he told me, you got to get ready.
If you want to play sports, you know, you gotta be in shape. And when you go to high school, you know, you gotta, you gotta be strong. Yeah. I understand. At that time I kind of was like upset with him and he would take me running in the room and then other people would see us running the mine. And we’re like, what are you doing?
You’re up so early. And they told me, Oh, next time you guys go, give me a call. I’ll go with you guys. So then someone else came with her. So my other brother was a good influence on me. He was kind of like a five fear cause my dad was always working, but my brother shared with me, like, I want to say he’s four years older than me.
The things he learned, he passed down to me. It was trying to help me get prepared, meets a site. I could be prepared for what lies ahead. Professionally tool. He’ll tell me, you know, you need to keep account or keep track of what’s going on so that you don’t miss appointments. He taught me things like that.
When I was in high school, of course I was a freshman. He was a senior. I forgot my locker combination. He will let me use his locker. He signed me up for summer school, even though I didn’t need to go, but so that I can get an edge up on my. Coursework, uh, slightly better prepare for the college placement exams.
And he actually took me to a couple of his classes when he was in college. So he was a good guy. Um,
David Hirsch: you mentioned you had older twin brothers, which one of the two twin brothers.
Juan Vagilenty: So older brother. Uh, he became a Catholic priest. Okay. So, uh, this is the brother I’m talking about. Um, He was a great influence in my life.
And he also kept me alive.
David Hirsch: Well, it sounds like if I can paraphrase what you’ve said at first, he sort of resented the fact that he was getting you up and pushing you, but you realize within a reasonable period of time that you know, it wasn’t doing this because he wanted to be a jerk about it, but he was really looking out for your best interest in helping you, you know, Mature a little bit faster, right?
Know, make more of the limited time we each have as young people, you know, so that you can compete, you know, on a, on a bigger scale. And you, you did mention, you went to the university of Illinois, which is something we have in common go alumni. And, uh, you know, that’s a big school. You could get lost in the crowd.
If you’re not prepared.
Juan Vagilenty: So one thing that kept me, cause I know I had friends, they like to have fun and it was knowing I didn’t want to come back home disappointing my brother and sister and my dad. So it kept me in line at school too, just to Dallas, you know, everything. They, they helped me with said it.
I know how art is when you go out. To school for the first time, it’s kind of like, you know, God is free and solid. That that was a big influence on me.
David Hirsch: So let’s switch gears and talk about special needs first on a personal level, and then beyond. So before Amelia’s diagnosis, did you or Anna have any connection to the special needs
Juan Vagilenty: community? No, it didn’t. Um, the only thing that I had some experience, cause like I said, my brother is a Catholic priest and so he did a lot of service in the community.
I know he would help people in the neighborhood who had some kind of disability. And one time he recruited me to, uh, help a young man who was disabled and elderly mom could not. Get them to the car, into the hospital and appointments. Cause if they lived on a second floor and he had no way of love, he couldn’t walk.
So I brought her, told me to go help her. And I’m six feet, two inches tall. And I weighed at 200 pounds. My brother’s like, yeah, five, eight, one 40. So of course he recruited me. A couple of times to help people who are in need. But, um, I remember when I helped to save, I had to pick them up and, and carry him to the car.
And then we took him out of the car to the doctor, does office. And I remember thinking like, what a hard life, this is really hard. This is challenging. Yeah. I don’t know how people could live like this. He also try to recruit me to become a catechist. They wanted to sign me up, sign language, which arrests retrospect I should have.
Because later on, it would have helped me with my children. Cause I later on had to learn a language when as a young person, you’re you want to live life, you want to have fun and you don’t think about that. Well, my wife too, um, she’s a physical therapist, so she’s always helping other people, people. And at times, you know, she’s helping people with disabilities.
So she has a very, um, kind bedside manner patient. Well, it’s also a challenge because when you deal with that every day, it’s hard for you to come home to the same thing. Now that she has her, we have two children with disability with significant needs, but, um, she was always kind and she knew kind of like, um, the challenges, uh, people with disabilities face.
The other thing was that I did work as a summer intern when I was in law school was the disability and elder law clinic. No. I just remember how kind of people who were, who were dealing with the community with disability and helping them, the parents and the actual people. The reason why I wanted to do that, the internship was like, I was thinking, you know, do you want to work somewhere where you’re going to feel that you’re doing some good and you’re helping others.
So I go, I’ll check that out. That looks like a nice place to work at Dubai. Very nice people. And it did, I mean, but. It never crossed my mind that, you know, I would be in a situation. Both of us would be right now. We were hoping, I mean, you know, like everybody else, they talk about the trip to Paris and then you ended up going to Sheboygan, Wisconsin, nothing to say bad about Wisconsin, but you know, it’s kind of con something like that.
David Hirsch: I think the, uh, the story, just to be clear, one, if we’re on the same page is that there is a poem. I don’t remember the title of the poem. But I think it’s, it might be a trip to Paris and a plane leaves to go to Paris and Atlanta in Holland. And you’re like, well, no, no, I didn’t pay to go to Holland. I, I signed up to go to Paris.
Right. And, uh, you know, It’s like, well, sorry, you’re in Holland. You’re gonna have to make the most of the situation. And you know, it’s a very, uh, eloquent poem, uh, particularly for people that find themselves in a different place than they might’ve anticipated. Hasn’t a lot of things in life as well as being in a special needs family.
So let’s talk about each of your children first, Amelia, and then max. So what is Amelia’s diagnosis and how did that transpire.
Juan Vagilenty: So Amelia has what’s called Pallister Kilian syndrome. It’s a rare genetic condition. I’m not the medical expert. My wife is, but there’s a, like a split in the chromosomes and it’s almost eight, which means it affects some cells and not the other cells.
So there’s like a spectrum where they can affect certain things or doesn’t. So there’s like maybe 250 cases worldwide and Amelia had it. As it, uh, we didn’t know until nine months it took us nine months from her birth to find out. At first, my wife kind of noticed that my daughter wasn’t reaching her milestones as she will tell me, but I just thought she was being too, um, you know, she’s, she’s a physical therapist, you know, she’s a clinician, she’s, she knows she’s doing things scientifically in my mind, so you don’t get to it.
You know, it’s just every kid’s different dictate. You know, some kids reach their milestones in the dark. So. But then we started noticing things that she wouldn’t see. She wouldn’t, she wouldn’t react to like a finger in her eye. Like we would put that finger close to her eye. She wouldn’t react. So my daughter is I’m legally blind.
I’m non verbal because I have a very low tone. She can’t walk her mobility. It’s limited. At that point, she practically didn’t move. She wouldn’t roll. She wouldn’t cross, she wouldn’t, you know, stick up her head and she tend to keep her head pointed to the light. For some reason, she kept on staring up. We used to live in his condo and there was a big balcony door window.
And your last son came in, she’d kept her, you know, turning her head towards the light. We didn’t understand. So we thought at worst, she might be blind or so then what’s going on. So we had, we did all these array test and filing. We did the genetic test and they confirmed that it was a BKS, which just acronym for Pallister Kilian syndrome.
So once we found out we got in touch with the community, um, and after their, their website, uh, PTs kids. And so in learning that we were finding, you know, more about the condition. So when you’ll see, you know, she had low muscle tone, she, uh, had cognitive delays, cortical visual impairment, which was the, um, That’s the division aspects.
Um, she couldn’t see things clearly as it’s kind of like a broken TV antenna, the picture isn’t clear. So knowing what, what were the difficulties that you would face? Then we try to, you know, find ways of helping her installed. Now Dallas, the challenge and continues to be the challenge today, but she’s made a lot of strides at first.
It was hard. Well, we’ve talked to the geneticists. He said, I have good news for you. And at first I was like, Oh, nothing’s going to be wrong. And we’re going to this meeting the geneticists. And we’re thinking on, they’re going to tell us that she’s going to be okay. It’s not the problem. It’s just that there’s something going on that they can solve easily.
But to him, the good news was that he found a diagnosis. So when he told us that he didn’t really tell us, explain to us what was, what was going to happen. And then when I asked them, I told him also, if she can, so what does that mean? That’s she going to grow up? Normally says, no, she’s going to be significantly.
Um, cognitively impaired. And, uh, and he hit us and we were kind of left our jobs open and he told us, what do you want me to call you a cab? So you could go home. And I don’t think you could drive right now. Um, so that was a big challenge for us to get over with. But once we, you know, everybody goes to that grievance stage, um, Dennis now, what do we have to do to help the parents?
And, you know, and, and that’s what we did. We, we said, this is Amelia. You know, we love her and we’re going to help her be the best you can be. And that’s how we face it.
David Hirsch: Well, thank you for sharing. It sounds like it was a overwhelming experience, ironic that they noticed since we’ve used the term good news.
But you know, as you explained it, Part of that is just knowing what it is, I guess that is good news. So now you can make some decisions about your plan and how you’re going to address things as opposed to a lot of families go undiagnosed, you know, not just for weeks, months, or years, but never. And you know, they’re just dealing with the symptoms and trying to poke around and figuring out what the best treatments are, whether it’s occupational therapy, physical therapy, speech therapy, et cetera.
And I guess there’s some benefit. To knowing what it is. So now that you can start to gather resources and make some plans, it sounds like that website was an invaluable resource for you early on. Were you able to connect with other parents with outer children that were a little bit older than Amelia and develop some, uh, understanding of what you were getting into?
Juan Vagilenty: Yeah. Yes. So the nice thing about the organization is that every two years they have a worldwide reunion. So the following year, when Amelia was tool, they had the reunion in Fairfax, Virginia. We went to, we met a lot of parents. We actually met some parents from Illinois. Um, we were able to connect with our families.
We talked to parents of children who were older, you know, they told us, you know, what to expect, but, uh, the main thing was that love and accept your child. And. There’s potential. So you have to help them reach their potential.
David Hirsch: Well, is there any meaningful advice that you got beyond the, you know, do the best you can help them reach their potential, anything specific that comes to mind from those early days or even more recently as you might have been attending these conferences or these reunions every couple of years.
Juan Vagilenty: Yeah, well, there’s a lot of challenges and you have like helping your kid, which is potential, but there’s the external challenges. So they provide you advice on the therapies. Also, like there’s kind of like certain things to look out for. As far as the condition, some children tend to have issues with stir of stomachs or their
David Hirsch: hearts.
Juan Vagilenty: They ask you to check that out also with their through spines. But they knew it was a realistic kind of stuff as far as like, um, I guess marriage counseling, cause it just a stress on the marriage. So they did give us advice for that.
David Hirsch: Looking back on it. Were there any important decisions you can say, you know, in the first nine years of Amelia’s life now that were like really instrumental for helping you make good progress or helping her reach her
Juan Vagilenty: potential?
So we still, we, we live in Chicago. We stayed in Chicago when most people are telling us to go to, to the suburbs where the, um, services for children with special needs, they’re a little bit better, but our situation and requires that we stay in Chicago because our health is my wife’s parents who help us with childcare.
So. We were looking at schools and Chicago, you really can’t pick or choose school, really pick a school that’s close near you. We went to well visit a school and by mistake, they weren’t even expecting us. They thought we’re gonna look at it like a third grade classroom. So when we went to go observe the classroom, the teacher wasn’t expecting us, but she was opening up.
She invited us in and we noticed that, um, She was a very, um, good teacher with the children. So children have several types of disability, but each child in their own way participate in, in, in her classroom and instruction. So it was weather. So one child was able to say it was rainy. One child was, was able to go point to the picture of, of a rain cloud.
And one child had to be given the choices of two things and he was able to pick the right choice. And she wasn’t like sweet and Kelley teacher. She was like, Hey, let’s get the work done. Each of you can do it. And she wasn’t afraid of our daughter because our daughter has a lot of needs. And most, most of the time, you know, you think.
Well, you don’t have any child, like my daughter in your classroom, then she would say, yeah, you know what? We don’t have the resources. She was like, no, we can do it. And so for those familiar with stuff, city of Chicago schools, you kind of have to, um, advocate for what you want in order to get things that you need.
So we have kids that should be placed into school and it was a challenge. But she got to be in at school with that teacher and the things we were doing with her, your daughter at home to help her, um, progress. The teacher also believed that she can do it, and they actually worked at it at school. So once we got over all those challenges and the teachers started doing what we were, what she wanted to do top familiar.
We’re talking about spending like an hour and a half. I have to feed her because she couldn’t feed herself. She wouldn’t want to take the food in her mouth. She wouldn’t want to drink. So we would have to figure out, you know, always have to be, you know, trying to get her to drink something. And with the help of the teacher and the consistency of things being done at home and at school.
So I’m an hour and a half of feeding Amelia every day, three times a day. Yeah. I went down to 15 to 20 minutes where a Amelia is actually holding the spoon somewhat and feeding herself, drinking from a straw by herself only having to help her grab the bottle. Initially, we’re talking about Amelia being able to with minimal assistance, walk on her own to the bathroom, to her bedroom around the house, around the school.
So at my daughter’s school, she’s now a M I’ll fix you at the school where they see her walking, practicing her, walks around the school building. So you know that for us, it was like one of the best decisions I think we ever made for our daughter was to stick with that teacher because it did help Amelia.
And I helped us. I mean, I think that was one of the big decisions.
David Hirsch: So we give proper attribution. What’s the teacher’s name and what school are you talking about?
Juan Vagilenty: Well, it’s as in park school, the teacher is kind of a, she, um, I’m not sure she would want us to guitar her name. She’s not, um, I just saw her first name is Patty, but she’s a good teacher.
I mean, when you talk about good teachers, those she’s one of, one of those up
David Hirsch: there, so, okay. Well, what I think of is people like Patty being in your life as the angels.
Juan Vagilenty: Yeah. You know,
David Hirsch: sometimes, you know, right away. And sometimes you don’t know until you look back
Juan Vagilenty: yeah.
David Hirsch: On the role they played yeah. In your family’s life and in this case a million his life and what a profound impact that they’ve had.
So thank you for sharing. So. Emilia is nine. It’s not lost on me. That max is seven. So you have a child with some pretty severe special needs, um, PKS and you have another child. Was there any contemplation about having another child or how did that decision come about?
Juan Vagilenty: No. I mean, cause we weren’t thinking of having a child right away.
But uh, my wife did say that she did want to have two children almost within the same age group that when they grow up together and we were hoping that, you know, demo would have a sibling that would look out for her when she was older. So when max came around, we were pretty excited. Max was, was scheduled or his anticipated birthday was January 7th.
Which ironically is the same birthday as my dad. And, uh, on October 26, prior to January 7th, we went in for the routine checkup, the sonogram, and they noticed that there was issues with his heart. And then he also knows that there was a lot of fluid in his lungs. The first day we noticed that the technicians and the doctors face faces just went white.
They knew our history with, with Amelia. So I think they’re kind of like, uh, we’re like, what is this? We kind of had a feeling there was something wrong, but then when they started talking to us, they said that, you know, uh, in order for your child to survive, you need to stay in the hospital. But if you choose not to have the child, then we can arrange that too.
And I’ll make well what’s going on. Or we were like, what’s going on and, and donated toys, your child. Has fluid in his lungs. So we will need to operate him well in utero. And it’s very a complicated procedure. Take the fluid out of his lungs. But even if we do that, it’s no good it’ll survive. And then even if we do all that, he survived, there’s a high likelihood because they, I guess they know us because of the heart that he may have down syndrome.
So they told us you can avoid all that. If you, if you decide not to go through with the birth and you know, my wife, um, and I gotta give her credit, she’s a strong woman, but our, our, our, our, our minds are like, know, we’ve been through this with Amelia down syndrome to us. It’s like, dad’s great. You know, that’s not a question.
So, you know, of course we went through with the procedures and. It was very hard and you know, my wife, um, she went, we went through all those procedures together and, um, she had to be in, in the hospital. So they kept us in the hospital and they had to do 3%. I think it was, if I can recall it was three procedures where they had to go and neutral and it’s great doctors.
I mean, God bless them. And I, I don’t, I feel bad that we have, we’re not sending Christmas cards every year, but, uh, They did amazing things. They actually went into in utero and took the fluid out of Max’s heart three times in order to buy him more time in the wound so that he would have a better chance to survive me and developmentally wise.
So thank God November 13, he was born. And, uh, I remember that day, you know, I remember when a metal was born by it. I remember when Mary, this is boring because of all the challenges he faced. And I remember seeing him. And it was just, just an amazing feeling. And it was just like, wow, this guy survived. So it was, it was hard.
But, um, I dunno, I think that challenges we face as Amelia kind of prepared us for deckhands we had with max and we weren’t expecting it. Somehow we gain punished for something that I don’t know what we’ve done. I mean, I don’t think I did anything spiteful to anyone or my wife’s didn’t despite for, to other people, but it was just like why it has happened.
But now that. Then we experienced our children and, and the way they are that their unconditional love for us, I think has strengthened our relationship with my wife and with God. Cause it’s just like these two little individuals, you know, they love, and it doesn’t seem like they have any, um, mouse in Dumbo.
Their love is so pure. And so. Yes, they are challenge does a challenge. Raise the nominate. You know, it puts stress on my wife and our relationship, but I think in the end it keeps us strong. Well,
David Hirsch: that’s an amendment story. Max is a precarious entry into the world. Having these procedures done these surgeries in vitro.
And then, uh, somehow it’s like a miracle that he was born and, uh, you know, it sounds like a. Super challenging period of time. I’m trying to put myself in your shoes is one, you have a young child with special needs. You have a pregnant wife, you get this news and it seemed like it would have been just overwhelming emotionally.
And then this a sense of relief once the birth comes by that he’s okay. And then, you know, you’re, you’re climbing a different mountain. Right. You have a child with special needs PKS, and now you have to come up to speed on what down syndrome is all about. Was there any additional advice that you got maybe from the Down’s community about some of the challenges that were ahead or people that are quite an influential role
Juan Vagilenty: early on, sorry.
Dana tenant ups for downs conference. And there were a couple of books that they recommended on helping your child learning. School-wise. So it’s a speech one and there’s a physical therapy, one occupational therapy, one, those were helpful and not be maximizing his milestones, but just, you know, talk to other people.
They recommend resources. There’s some books that are really helpful. Like as far as behavioral wise with children wants downs. That helped a lot with max in school. You know, a lot of people would advocate advocating for children and being included in school with their typically developing peers and, um, And he told us to, to advocate that for max.
And I think that was very helpful for us and for max. Excellent.
David Hirsch: Did I remember you telling me in a prior conversation that he also had heart surgery after he was born?
Juan Vagilenty: Right. So once we got over the, him being born, they taught us in six months, they would have to patch his heart because, uh, I typically I could in car has four chambers.
Uh, he only had like, uh, No, actually he had no chamber. So there was no dividing wall between the two sides of the heart. They would have to open up his heart and put a mesh lining to create the chambers of the heart. And so they did that at six months. And, um, you know, this, this little guy, small and thought, I, I did a mistake of, of, you know, and I told her, your I’d said we can do it.
We’ll do it. And I’ll be over in like a day. And then he recovered. Well, when I looked up YouTube and heart surgery for children, they actually showed one where they actually took out his heart, put it on a table, cut it, open inserted the mesh, put it back in his heart data machine while the heart was out, keeping him alive, pumping the blood to his body, a little guy, six months old.
And then I saw it voted on me, Holy smokes. And I’m like, but then the child comes out of surgery. They actually told us to step out of the way, because he was crashing. They had to get his kidneys and everything functioning, some things weren’t functioning. So I was like a disaster, but somehow these two accredited professionals, no, they were able to, to get them running again.
And, uh, you know, they don’t tell you about, you know, all the drugs they put on mine, then he has to. As a six month old, he, you know, they withdrawal, I’m a drug addict because they ran out of drugs. You know, your son shaking and lining. It’s really because he’s going to withdraw. Wow. Yeah, that was challenging too.
But somehow as a family and we got through it, um, and the other thing, our extended family helped my, my inlaws, again, credit to my, my inlaws and then my sister. We’re watching Amelia, but we’re in the hospital. So we lived in the hospital when he was being born and input of heart surgery. And then that was it.
Wasn’t the end of it because of his heart condition. It’s weak. Heart has a ability to get over cold. Um, his first four years of his life, I’ve never five. Every time he got a Cody or either end up in the hospital with pneumonia, with a collapsed lung. And in the first year of his life, he couldn’t retain food.
So we would have to get them through a feeding tube and help keep them up upright at night in order for his body to adjust the food to him, the environment, he and I, I’m pretty sure there’s families out there who understand this process because. There’s this machine that starts pumping the food into him and he makes this noise and your whole, your child and the food’s going in him.
Right. And you need just hoping that it goes down and he doesn’t end up vomiting and stuff. So a lot of sleepless nights and, uh, I’m quite, I’m blessed to have my family and my spouse and, you know, they helped us get us through this because otherwise, I don’t know how people do this alone.
David Hirsch: Yeah. Well, thank God for your in laws and for your sister who you mentioned, you know, were there each time you had to be in the hospital with max and, um, it seems like you’ve been through a lifetime of challenges and your kids are only nine and seven years old.
I’m hoping that the situation has stabilized and that no, it’s not easy, but it’s more manageable so that, uh, you know, you can be. I dunno as typical as you can be based on the circumstances and not to belabor the point, but I’m wondering what impact the situation. I think you mentioned this earlier, what impact the situation has had on your marriage or extended family?
Has it been challenging or has this been something that’s allowed you to rally together and be stronger?
Juan Vagilenty: Well, to be honest, and I think most people without special needs kids raising kids is a challenge. It puts strain on the marriage because at times your focus is on, uh, an older communist, these challenges and you know, and there’s no time for, for the marriage.
And then you have other things in the mix work. And so it’s been very challenging, but I think, uh, Well, we’ve been through all in made us stronger as a family, even though we do have our ups and downs. And, um, I think in the end, um, it’s, it’s kept us closer than we would be if we didn’t have these problems.
David Hirsch: so a one I’d like to talk about the supporting organizations that you and your family have relied on. We’ve talked briefly about Misericordia and what’s the program’s name, the misery recording program that a young families like yourself are involved with.
Juan Vagilenty: It’s called the outreach program. And, uh, it targets, um, families with children from the age of birth to, um, eight years old.
And then they have other programs, kids who are a little bit older. Okay. We’re in, that’s a young program. So they have playgroups where we go to Misericordia Northside facility. And what’s great about it is they have these, um, student teachers from Layola or going into, um, Early childhood education. And some of them are going into special education and they volunteer and they do arts and crafts with the kids.
You also have some games, someone comes and plays music for the kids and the meanwhile, the parents can either sit back and watch. But what happens is the parents start talking and networking and sharing ideas and stories. They also have. Other programs like swimming. We’ve been going to that swimming class since my daughter was spent almost nine months, 10 months old, it’s been a great resource and Maddock.
Um, she’s the director of the program, wonderful person. She’s also a parent of child with disability and she gave us, you know, tips. People to talk to, like we were trying to get, you know, we’re trying to find a school for our daughter. So everybody’s talking about this school in the North corner of the city by, and we asked an answer that it was a great school.
She was, she wanted her daughter to go there and she knew someone there. And she told us to mention her name and me and my wife got our things up and moved to the far corners of the city. And we took our daughter to that school and it was a good school. So things like that, just, um, the ability to talk to other parents who are going through the same journey and then, uh, they have mass for the families.
I think it’s every other weekend they have a mass on the evenings and Saturdays. Where, you know, sometimes, you know, you have your child and , and you don’t feel comfortable at your regular church. You know, so churches are not that great. And, um, accepting people with disability, the noises they make. So some families go to that mask.
So you feel comfortable there, everybody, you know, understands and they get the kids involved. So it’s kind of nice, but I just want to mention one thing that, um, uh, sister Rosemary thought. The powerhouse behind mr. Cornea, uh, said, wants to us, you guys are special because if Christ went and knocked on your door and told you, I want you to take care of this child, most people would say, get out of here and you would say it, but he and your there virtually that you would accept the child and you were okay, right.
Person to raise this child. And just hearing that. Well, it’s like, wow, that was like that like summarized, how would we thought? It’s like, you know why us? And, and sometimes that’s how we feel like maybe we are the right people for these kids. Yeah, it’s a great resource.
David Hirsch: Well, thank you for sharing. That’s a very powerful story about Rosemary, who is a legend, literally in her own time.
Um, and, uh, you know, it’s interesting to reflect on that statement. You know, if Christ knocked on your door and said, here’s a child, you know, what would your response be? And. You know, I, I think I would agree with you. Most people would say thanks, but no thanks. And, uh, you know, it’s a powerful testimony to the work that, uh, sister Rosemary and all the staff and the volunteers, it’s an amazing organization.
Juan Vagilenty: Misericordia has changed throughout its long history. Once known for its care of infants with down syndrome, it has expanded under sister Rosemary Connelly’s leadership into a community of children and adults with intellectual and developmental disabilities. I believe every person, no matter what their background is, whether they’re born with disabilities, whether they become disabled.
They deserve the best life possible.
David Hirsch: And you’re just scratching the surface. Right? The, the outreach program, what you described is really for young families, you know, for, like you said, zero to maybe eight or nine, and then they have the teen program. And then what most people know Misericordia for is the residential programs and all the other day programs that they have for young adults and adults.
And, uh, Can’t say enough about the resource. Are there other organizations that have played an important role in your life?
Juan Vagilenty: Yes. Or early on? Um, we had a followup with another geneticists. I told you about the first geneticists. So once we found out what her, her diagnosis was, my daughter, there’s a checklist.
You have to go through to make sure, you know, she doesn’t have these other problems. So we went to geneticists to find out other things. And he told us, Oh, this is a great resource, local tech, what it is, it was a toy lending library. My thing is, and I, I guess most ads, even moms it’s okay. How can I help my kid?
What’s going to help me, the kid develop to the best they can. So he started researching. And of course, unfortunately you look up, okay, I need this kind of equipment. And it costs like a thousand dollars for this simple little thing. And you’re like, Holy smokes, but you’re like, okay, I got, I gotta figure out a way how to get that money.
So lack of tech, the basis of it is they get these adaptive toys, which could be like from switch activated a little, um, like the monkeys who have the symbols to these awesome little toys that where the child doesn’t have much more belly in their hands. If they just move something, activate all the sounds to engage the child.
And they would offer different toys. You could take up to like six toys every other week. Um, and it depended on whether or not you could afford it. They’d had scholarships for families who couldn’t, but I tell you, I was like, it was worth its money. If you could afford it. Because you’re now only got the toys.
They had resources for parents. They had gatherings for parents. We met so many families do it, our organization, and it broke my heart when they had to shut it down. Cause of course, you know, it costs me money to have those kinds of toys and the space they were at was very expensive. So it was in Lincoln park.
So they shut the organization down. But I think that lack of tech still exists play in other areas, not in Chicago area. And part of the other resources related to lack of tech that also takes, they mentioned to us about that organization was still the Chicago lighthouse for the blind. Yeah. Initially the diagnosis that we thought our daughter I just had was to, she had some kind of visual impairment.
She’s legally blind. So, so everybody will say, well, then you need to get up usual therapist to help find out what’s your vision and how you can help her develop some kind of use of her provision. So those families who know, who have a challenge, visual impairment gain those therapist is very hard. And, and, and there’s only a fuel in certain areas.
So it could take about a half a year or two a year to get one. So it was funny. I like I was mentioning before. I was volunteering at this clinic to get my continuing education credit hours. And there was an attorney and I was talking to there off and on about cases and, and, and, and the work we’re doing at the clinic.
And we seem to get a lot of, for some reason, I just opened up to them that, you know, I had to start who couldn’t see. And, um, you know, we’re trying to get, or do services and we have to wait and so happened. His wife was the director of the Chicago lighthouse for the blind and. That help get things set up for our daughter and Sebaski is it’s rich and Mary’s above ski.
They also started an organization, uh, Illinois, parents of visually impaired children. You talk about great dads. There’s people like me. It’s my blood, these children. I might like my children. So you know, how hard is it to love someone that it’s related to you? And rich is a great dad. He married Mary. So Belsky when she, you already had a child over almost through another.
Um, yeah, and her daughter was blind. So most guys don’t, you know, most guys don’t want to get married to someone who already has had a kid, but then when the child has a disability, it’s even a double. But, um, if you could talk to them and you talk about the story, rich was very interested in a daughter.
And that would caught, uh, Mary’s heart tool. So he raised her amazing cause he, he taught her how to ski taught her how to ride a bike. He taught her how to do some roofing. It would take her to court with him as an attorney. And then, yeah, I advocated for her at school. She did so well at school. When they first stopped, you had like a learning disability.
Later on, they find that it wasn’t, that she had a learning disability. It was that she wasn’t being challenged. She excelled in school so much that she was the first person to graduate from Harvard. That was blind.
David Hirsch: Oh my
Juan Vagilenty: gosh. Yeah. So, and she also went to law school. So his story is great because it just tells you that there’s some amazing people out there who take on this challenge of, of, of raising children with disability.
And like I said, it’s. For me, it’s easy because it’s my child. I mean, but so for someone to walk into the situation and open up their hearts to someone who is not related to them by blood, that’s amazing.
David Hirsch: Yeah. That is truly an amazing story. So what is the daughter doing now? Well,
Juan Vagilenty: unfortunately, due to her condition that she had, um, and I’m at fully keen on the medical term is, is that she had some kind of a tumor in her retina.
And it developed to be cancer. And so when she was having her second child, the tumor, um, developed to the point where, where she would have to be received chemotherapy, but since she was pregnant with her son, she couldn’t take the chemotherapy on this sheet. She would terminate the pregnancy. So of course she decided not to terminate the pregnancy.
And eventually she passed away. The son was born and she had the parents, her mom promised that she would take care of the children, but like life is, uh, they became a strange from the son-in-law and he took the children with him. And recently about two years ago, they took in the grandson and are now raising him.
And of course that takes challenges too, but they open up their hearts in their home to him. And they’re taking on the challenge of raising a teenager. Well, they really didn’t have any chance to meet or deal with them until now. So they’re, they’re amazing people. Well, that’s
David Hirsch: a wild story that you just shared.
One that, uh, the daughter died shortly after she gave birth to her son as a result of not being able to. Take the chemo treatments to address the retina tumor and that, uh, through this strange twist to the story about the dad, you know, taking, uh, the kids, uh, which is, you know, He’s the dad, it’s his right to do what he wants with his children and that they got upgraded away from their grandchildren.
And, you know, it seems like, uh, the story is evolving, right? If the boy, the younger of the two children is 12 years old now, and hats off to the spouse case for doing all the work that they do on behalf of not only their own family. But families like yours in so many others that they’ve impacted. So thanks for sharing Illinois parents.
So the visually impaired and then a Chicago lighthouse for the blind, I think were the two organizations that you said that there’s about skis have been instrumentally involved with. Yes. Are there any others, any other organizations that you and Nana have benefited primary you and your family have benefited from?
Juan Vagilenty: Like I mentioned, my, my wife was a physical therapist. She got her doctorate in physical therapy at UIC. And then there’s the staff of UIC. They have, um, occupational therapists, they had social workers that reached out to our family and took us in. And they actually, to be honest in the beginning, they, you know, when you first find out the diagnosis of your child, it kind of feel lost.
Like if you’re falling off a cliff and you’re just gonna keep on falling. But when we got those services and we, we met those professionals, They kind of made us felt like they’re holding us like angels in us fast, slowly, so we wouldn’t get hurt.
David Hirsch: That’s fabulous. Thank you for sharing. So were there any other organizations that, um, your family has also benefited from one?
Juan Vagilenty: Yes. Gigi Playhouse is not a good resource. Uh, we, uh, signed up max for math tutoring. It’s free tutoring and they have these great volunteers who volunteer to help your child or a patient. They’re kind. And they’re these amazing people. Max is first tuner was a student from China, studying at the university of Chicago as a master’s in chemistry.
And she was very nice, very kind. And then, uh, the next to her was a chief financial officer for some company who was very patient and kind, and detouring happened on Sundays at 12. Cause that’s the only time we had. And these people were there and they would help. And it’s a great resource. They don’t charge you for that.
Anything, they have a lot of things for children with down syndrome. They also have a speech class. They also have a playgroup, but as you can imagine, we have all these other things, so we’re not able to, to attend most of them. The one thing we were able to do is took the math therapy for max. Because they get burned out.
The kids get burned out or we get burned out. But, uh, there’s a lot of things they do for, for kids. So, um, if parents need, um, resources and they have a child with down syndrome, third grade,
David Hirsch: Yeah. Well, thanks for mentioning GGS. Um, I think I mentioned to you when we first met that, um, all the Nancy, Johnny GGS parents are friends and neighbors, as well as fellow parishioners at st.
Anne’s Catholic church in Barrington. And we’ve known them well before Gigi was born. And it’s just an amazing story, you know? And you are just one of, I think something like 30,000 families across America who have benefited directly, right. From some of the resources that they’ve created with some, something like 45 playhouses scattered around North America, including one in Mexico as well.
And I can’t. Sing the praises of GGS Playhouse enough. And you’re just another testimonial. So anyway, I’m so glad that you’ve been able to share some of the resources, some of the organizations, how that you and your family have benefited from. And I’m sort of curious to know what role has spirituality played in your lives?
Juan Vagilenty: Well, uh, I think we wouldn’t be able to do this without it. I come from a, uh, traditional Catholic family. My wife does too. We go to church every Sunday, like I said, um, I think the challenges and the doubt you have when you have a child who’s sick, you know, it’s hard to keep your faith. But, um, my brother, the priest told me, it’s like, God’s, God’s kind of like a blacksmith.
He’s forging you in the fire to make you like tempered steel stronger. And when my daughter was diagnosed, I kind of why that to say, I don’t want to go to church anymore because why has this happened to me? And my wife was like, let’s call and I might take you for what? And then the more I thought about it, I was like, if you don’t believe then, then what else, sister?
And this is the, really the time now to have faith. Yeah.
David Hirsch: Well, thank you for sharing. Um, it’s very clear, you know, throughout our interview, you know, that I got is quite an important role in your lives. And, you know, I remember a rabbi I interviewed out in LA Juan saying that, you know, he doesn’t know how people without faith can bear the burden or the challenge of raising a child or children with special needs.
Right. Without faith that you’re trying to do it all on your own, it would be virtually impossible. Was his message. Huh? Thank you for sharing. One of the things that’s really struck me about you is that we met last year at the, uh, Special Fathers Network, inaugural dads conference that we put on. And, um, you have two super young kids, um, nine and seven years old, and you’re volunteering to be a mentor father as part of the Special Fathers Network.
Why is it that you’re, you’re volunteering at such a young age with children’s such a young age to be a mentor father?
Juan Vagilenty: Oh, well, actually it was funny because, um, I don’t know. I thought I was like, they’re all, they’re all they’re there, but I know I’m not, I mean, basically most of those guys there went through it off, but like that mental, like talking and sometimes, you know, you need to talk and then you need to be social with each other.
In fact, the tell a young dad, you know, Don’t give up, you know, some of the challenges you’re gonna face, you know, there’s ways to deal with them and overcome them. That’s why I find teared at me, but I know I need help too. So maybe you’re right. I should get a, a mentor.
David Hirsch: Well, um, we’re thrilled to have you as part of the network.
And I think that. You’ll be able to help other dads, perhaps that are even closer to the beginning of their journey, raising a child or in your case, children special needs. And I’m hoping you’ll also benefit from getting to know some of the other dads, the more seasoned dads, the dads that, you know, have kids that are not only teenagers put her in their twenties or beyond, because there’s so many more milestones that you and Anna and your children are going to experience over the next 10, 20 plus years.
Yeah. You know, you just feel like you’re part of a larger community when you can. Relate to what other people are going through. So again, thanks for volunteering to be a mentor father. Uh, let’s give a special shout out to, uh, Ann Maddock again at Misericordia for helping ’em put us in contact more recently and the great work that people at Misericordia do.
Juan Vagilenty: Yeah, they’re great. They’re great.
David Hirsch: Um, is there anything else you’d like to say before we wrap up?
Juan Vagilenty: Yeah, maybe it’s for those who dare to live in a city, there’s this great organization called raise your hand for special education. They provide, uh, research and, um, yeah, a good resource for people dealing or navigating the public school system, IEP and stuff and, and shit in the city.
They’re really good. And know, they’ll help you learn how to advocate for your child because. You have your child and you’re the first one medical challenges, but then you also, when you put them into the school system, it’s most parents know, sometimes it doesn’t go as great as you want to fill it. That’s another big challenge that we face as parents, children, special needs.
And they’re a good, great resource for like, as far as like the education part of raising a child with special needs in the state.
David Hirsch: Raise your hand as the name of the organization.
Juan Vagilenty: Yeah. Raise your hand.
David Hirsch: Yeah. Okay. Well, if somebody wants to learn more about Misericordia Gigi’s Playhouse, Illinois, parents of the visually impaired Chicago lighthouse for the blind, or just going back to one, how would they go about doing that?
Juan Vagilenty: They can email me, um, email@example.com. Okay.
David Hirsch: We’ll put that in the show notes. So it’ll be easier for people to find that. One thank you for taking the time and many insights. As a reminder, Juan 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, 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.
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Juan. Thanks again.
Tom Couch: And thank you for listening to the dad to dad podcast presented by the special fathers network, the Special Fathers Network. He’s 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. That’s 21stcenturydads.org.
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