095 – Joe Lofino Has A Two & Three Year Old With Fragile X Syndrome

Transcript:

Dad to Dad 95 – Joe Lofino Has A Two & Three Year Old With Fragile X Syndrome

Tom Couch: Welcome to the Special Fathers Network dad to dad podcast. The Special Fathers Network was created. So that dads with an average of 10 or more years of experience raising a child with special needs could share their insights with, and mentor younger fathers who are closer to the beginning of their journey, raising a child in a similar situation on this Special Fathers Network.

Dad to dad podcast host David Hirsch talks to young father, Joe Lofino, who along  with his wife, Jennifer, has two children ages two and three, both with fragile X syndrome. Joe talks to David about life so far with his children and how he’s adjusted to this sudden change of reality.

Joe Lofino: You know, geez, where we’re going from a place of not knowing anything about special needs to now you’re the dad and it’s all on you and the weights on your shoulders. I buddy saddle up and let’s go.

Tom Couch: It’s a heart wrenching and fascinating discussion. And it’s all on this special father’s network, 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: So now let’s listen to this conversation between David Hirsch and special father Joe Lofino.

David Hirsch: I’m thrilled to be talking today with Joe Lofino of Greenville, Ohio, who is a father of two and an operations manager at. Overhauls Holzer cabinet makers. Joe, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Joe Lofino: Hey privilege being here, David.

David Hirsch: You and your wife, Jennifer had been married for seven years in a proud parents of two Joanna two and Joshua three, who both have fragile X let’s start with some background. Where did you grow up? Tell me something about your family.

Joe Lofino: Yeah, David. So I grew up in Clayton, Ohio.

Uh, it’s just about 45 minutes South of where I’m at now. And, uh, I’ve got a older sister, older half sister, Nina who’s four years older than I am. Only reason I say half is because mom was previously married. I really call her a sister. I’ve also got an eight years younger brother, his name’s Justin. So I grew up in a house.

Uh, both parents worked full time. Both of them were at the post office. They were great parents and carried mail all day. You know, what did I say? Like a snow rain, sleet.

David Hirsch: Hail, right?

Joe Lofino: Yeah. With a strong work ethic, there went to North ma senior high school where I didn’t do so great. Educationally, but, uh, ended up transferring to the Miami Valley career technology center and grades shot up.

I got a 4.0 there I majored in carpentry and had great instructors. And also that’s where I met Jen.

Okay. Wonderful. So you took more than an education away from there?

Oh yeah.

David Hirsch: I want to go back a little bit. You mentioned that both your parents were letter carriers that worked for the post office. Is your dad still alive?

Joe Lofino: Yes, she has parents who are both living still.

David Hirsch: Okay. And, uh, do they live nearby then or not?

Joe Lofino: Yes. My dad lives in the same house that I grew up in and my mom moved down South a little bit in Inglewood. Okay. Yeah, they divorced in 2013. About a month after Jen and I got married. So that was kinda interesting.

David Hirsch: Well, sorry to hear that, but it’s nice to know that grandma and grandpa are quilted really close

Joe Lofino: by. Oh yeah. Yeah, totally.

David Hirsch: I’m sort of curious to know, how would you describe your relationship with your dad maybe as a young guy growing up and then as an adult now?

Joe Lofino: Hmm. Yeah, I would say. Gosh, man. The word that comes to mind is just terrific.

You know, I’ve, I’ve been very, very, very blessed with having a great dad, super hard working guy. He’s had a lot of troubles in his life, you know, but he’s very resilient and, uh, still totally full of energy. Happiness, love joy. He he’s always asking us as send pictures of the grandkids and uh, always reaching out and stuff.

So he’s. By far there’s nobody else I know on the planet. That’s that’s like that guy.

David Hirsch: Yeah. Well, it’s nice to hear that, uh, you have a strong relationship with them and he’s been there, right? He’s been president in your life, you know, from your beginning of time.

Joe Lofino: Yeah. Yeah. His, his dad left when he was geez.

Maybe like, uh, geez. I think he was maybe 12 or 13 and, or maybe even younger. I wish I knew I apologize, but. Yeah. He was raised by his mom, my grandma, she raised five kids, you know, as it’s really cool that he stayed. Yeah. Yeah. Well,

David Hirsch: sometimes the pendulum swings one way, you know, if your dad grew up without his dad, it gives you an extra resolve to be there for your kids, because you know, some of the feelings and anger that goes along with, uh, you know, being raised in a single parent family, at least that was my experience.

My parents divorced when I was. Six, my younger brother was five and my mom raised me and my younger brother is a Chicago public school teacher. And yeah. Yeah. It’s just to emphasize there wasn’t a lot of money or resources and it was sort of challenging, but, uh, you know, she did a great job and, you know, isn’t anything that my mom wouldn’t do for the two of us.

Yeah. So, uh, you know, there’s a little, uh, kindred spirit going on there. I’m wondering when you think about your dad, you mentioned he has a good work ethic and he’s a upbeat person. He seems like he really enjoys being a grandfather. Is there. An important lesson or lessons that you learned from your dad that you’ve tried to incorporate into your own father and that comes to mind?

Joe Lofino: Hmm. Yeah. So, uh, you know, I tried to be gentle with the kids, you know, uh, that’s a big thing is trying not, and, you know, I’ve learned the hard way by overreacting on certain things. But my gosh, man, you know, just, just being gentle with them, you know, they’re learning. Uh, you know, the kids, a common thing right now is throwing food on the floor from there.

And, you know, Joanna tries to hit me in the head with a piece of broccoli. We cleaned it up and, you know, we’re trying to teach ’em, but they’re still learning their sensory motor skills, you know? So we just be relaxed with them, you know, be gentle and, uh, Definitely be a strong guy in their life.

So I’d

David Hirsch: like to switch gears. I’m sort of curious to know, how is it that you and Jennifer met? I think you mentioned you were at Miami Valley CPC.

Joe Lofino: Yeah. Yeah. It’s quite the funny story. Uh, so I, I was in carpenter. Jen was in culinary school and, uh, We had this random offshoot class called workplace literacy.

The only thing I remember from there was meeting Jen also met her cousin, Leslie, which we’re still great friends with. And we studied the seven habits for highly effective teams. Anyway, you know, I had this, this thing going with her, we just kind of hit it off. We talked before class and things. One activity we did was they gave us these humongous post it notes.

I mean, I’m talking three feet by five feet, you know, that those things, you know, and they said, Hey, write down a conversation, have a conversation with her with, with your partner. Uh, and only on paper, let’s see if you guys can do it. And I forget what the activity was even about, but, uh, I just, you know, Did that whole thing where you cross your fingers, man, I hope I’m, I’m teamed up with her open up team, up with her.

Sure enough. Think, thank God he put me, put me next to her. You know, we had a really cool conversation. I said, Hey, you’re going to be a great mom someday. She says, Hey, I’m sure you’ll be a great dad. I don’t even know how I got on that subject. We had a baby anyway. She gave me, you know, the last day of school, right.

It comes down to the line. And I’m like, Oh geez, I got to get her number. So I just went over to her. I said, Hey, do you have a phone? You know, the guy in the class, he’s a, he gives me the elbow and says, Hey, I think he wants you to number, you know? So I got her number, threw it in the cup holder. And forgot all about it because I started working full time, uh, as a carpenter, uh, I did the apprenticeship program there, CTCs I’d work two weeks, be at school two weeks and it was cool to make money, you know, get experience out in the field.

And so anyway, during that summer, I got really busy, forgot all about it, just moved on and she called me out of nowhere, you know? It’s just a one I’m the worst guy ever. I don’t know why she stuck around, you know,

David Hirsch: so I’m sort of curious to know if John wants to tell the story, do you think it would be identical to

Joe Lofino: yours?

Okay. I think I’d be like the superhero, you know, wearing a Cape or something like that. Big muscles and all that.

David Hirsch: Okay. Well, thanks for sharing. That is a pretty entertaining story.

Joe Lofino: Yeah.

David Hirsch: I’d like to switch gears if we can, uh, to, um, uh, initially on a personal level and then beyond, and I’m sort of curious to know before, uh, Joshua and Joanne were born. Did either of you have any experience in the special needs community?

Joe Lofino: Yeah. So I’d say, uh, no, not exactly. Not directly. I guess I did have a little bit though.

So. Well, I was at high school. There was a guy Gary in my class looking back now. I think he had autism, you know, he, he was a funny guy. Kids would make one of them, but I’d, I’d be there to just be friends with them. It was really hard to be friends with him though, because, you know, he couldn’t really make eye contact either.

It didn’t seem like he knew I was there. So yeah, my, my look at special needs was kind of down, you know, I thought, Oh man, it’s like a, uh, I don’t want to say a death sentence, you know, but it’s like, man, live, life’s kind of over for you. You know, I remember going in front of Kmart with my dad and we saw.

Somebody in a wheelchair. And I remember this very vividly when I was, gosh, a little kid, you know, 10, 10 or less, there was somebody in a wheelchair and my dad just looked down and I could tell you had tears in his eyes. And he just, you know, I said, Hey dad, what’s what’s wrong. And he said, man, I just, I always see people like that, you know?

And, uh, I always run into them and stuff. And so. With that, you know, it’s like, I’d almost look at someone with special needs. Like, man, life’s going to be really, really hard for them. And, uh, jeez, we need to be strong, you know, as gosh I can walk, you know, so I I’d see, see myself as being, you know, I’ve got all these blessings I need to be used in a while.

I can, you know,

David Hirsch: yeah. What a great insight to have at a relatively young age. And it sounds like your dad was insightful. About pointing things out to you when you were young and maybe shaping your heart about these things.

Joe Lofino: Yeah, absolutely. I would say no. Yeah.

David Hirsch: Yeah. Joanna and Josh are really young. Am I in there?

Two and three years old and I’m, I’m sort of curious to know how did their diagnosis come about with fragile X and what was your first reaction to that?

Joe Lofino: It kind of all, it also started when he was born in a sense. Okay. So we, we, we decided we’re going to do this natural births, you know, we’re, we’re going to go all the way.

Uh, no epidurals, no, nothing like that. Well, as we ended up getting closer, uh, it was a Friday afternoon. I got a call on the phone at work and Jen said, Hey, the OB appointment, didn’t go so great. Uh, I’m actually down at the Miami Valley hospital in Dayton right now. Uh, and I’m going to be induced and we’re going to have the baby.

So I said, all right, you know, vanished the dreams of driving her to the hospital with the cop, you know, leading us and all that. So yeah, I met her down there, ran home packed bags, met up with her at the hospital in the evening. We, gosh, I know I went to bed at maybe 10. We were up at. Midnight and just walked around all night, miles and miles in the, in the hospital.

The next day we had Joshua, we found out he was a McCone Liam. So he was kinda like suffocating and whatnot. So they had to suction him, which I know that’s, that’s probably a common thing to have happened. But man, I can tell you it was two 12 in the afternoon. I remember exactly what time it was. I can see the doctors hovering over him.

That’s my first child, you know, and. Laying there trying to cry, but he really can’t because he’s lungs are filled with fluid and stuff. So, uh, they pumped him and, uh, everything was cool. So we get home, you know, uh, we’re having trouble breastfeeding. Uh, so he’s not able to latch, you know, he’s starting to not take bottles very well.

He can’t sleep on his own, which I know all this sounds like normal baby stuff. Right. Right. So you always set them down. He starts crying within a second, you know, so we pick them back up. Well, the thing was, it was strange. She would cry until he would get sick, you know, he would, he would throw up a lot.

So we ended up taking him to the doctor. And jeez, I don’t know if we were maybe nine or 10 months in just his eating was not, was not going good. So we went to the doctor. I, gosh, I remember one time. We were at. Okay. So this would have been, uh, definitely when he’s like 10 months old, because we always it’s, it’s kind of the tradition.

We would eat at the Asian buffet with the family on new year’s day or around there. And Joshua, you know, they’re standing them up around on the table, you know, cause he’s only a foot and a half tall or whatever, you know, and, uh, we gave him one of those rice puffs. You know what I’m talking about? The stuff that dissolves on your tongue, when you man, we were trying to feed them those and.

We put one on his tongue and then he just gets sick all over the table and it’s like, he’s standing up, you know? And I’m like, Oh my gosh, man. Beginning of the embarrassment, you know, for moving on from that though, uh, we ended up meeting with the pediatrician and she said, yeah, something’s definitely up.

He’s not talking yet. He started jumping really early though, which is strange. Like he couldn’t even walk yet and he’s already jumping in his crib. That was another common thing is we’d hear the cribs squeaking all the time. He’d be just jumping in there. So, uh, we ended up getting the pediatrician involved.

She says, Hey, you guys should see a developmental doctor. So by the way, her pediatrician’s name is dr. Sidwell. She’s in Inglewood, Ohio, and she’s awesome. Very aggressive to get this stuff done. Uh, so we went to meet with the developmental doctor, another st uh, dr. Craig Borman, man, that guy, uh, changed, changed my life for sure, because he’s, he sees these kids all the time.

And so he was able to kind of ground me a little bit, you know, and take me off the ledge, you know, in a sense. So, uh, we ended up getting genetic testing done. We found out he was somewhat cognitively delayed. Then he said it was a global developmental delay. So meaning it was the entire brain. It wasn’t just like one’s isolated area, but he said, Hey, he, he makes eye contact.

So, you know, he’s probably, I guess, not as bad as he could be in a sense, but I don’t know a better way to put it. So, uh, we got the genetic results back in 2019. So Joshua was almost two years old. And before all of that, we’ve already started speech therapy because of the feeding issues. So we got the results back in March of 2019.

Okay. Yeah, it was kind of interesting, you know, we met with a genetic counselor. I had never heard of this stuff. We’ve got no exposure to this, uh, anywhere else in the family. You know, in that, in that counseling meeting with the genetic counselor, we find out that the fragile X is from, uh, the mother males have an X and a Y chromosome females have an X and an X chromosome.

So one of her exes was fragile. And, and the only way we found that out was. It was Joshua, right? So the boy it’s the ex from his mother. The only thing that makes him a boy is the why from the dad. So anyway, the X is from Jen. We found out it’s four mutation, fragile X, which basically just means that it shuts off a protein.

In the body and as they call it, the FMRP one protein that protein is really important to developmental of your brain. And, uh, a lot of other things, cartilage in your ears and your nose, your forehead, your feet. You know, it’s kind of strange how one protein affects your brain, but it affects your entire body, you know?

So, so that was kind of tough too, is you look at Joshua right now. He looks fine. You know, there’s nothing, there’s no thing that you would see from the outside that would make him any different. But over time we know that through puberty and things, she’s probably going to have, you know, pronounced forehead, flat feet, things of that nature.

David Hirsch: Okay. Well, it sounds like it’s quite a journey from the, I don’t want to call it the premature birth. You didn’t mention that, but, uh, sort of the sadness of his birth and then all the delays that were experienced and then finally diagnosed better part of it a year, year and a half ago now. And, uh, I’m wondering, um, was it a similar situation with Joanne she’s just a year younger or so than Joshua?

What was the situation? Um, if you don’t mind recalling that.

Joe Lofino: Yeah, for sure. So the hospital told me, Hey, wait, six weeks. So we had had some miscarriages beforehand little did I know that we’d get pregnant instantly again? And how so? Joshua was just barely born. And then we got pregnant with Joanna. We call them Joshie and Jo Jo too.

So I might refer to them as that. Jojo was, we ended up getting genetic testing done on her because you know, it can affect females. It doesn’t as much because they’ve got an extra X that they say that sort of a can fill in the gap for them because she’s for mutation fragile X too. So anyway, we found out.

With her that we found out in November. So when we did the test in October, I believe with Joshua took like three months, but we found out there’s a faster test. You can do. Uh, and so we did that one for Joanna.

David Hirsch: Well, one of the reasons I’m sort of curious, and I’m so excited about doing our interview today, Joe, is that, uh, most of the dads I’ve interviewed, um, are mentor fathers, right?

They have 10 or more years of experience on average in here. Uh, you and Jennifer have these two super young kids. They’re three and two years old. And, uh, you know, the journey ahead is, you know, A journey of a thousand steps, you know, one foot at a time. And, uh, I’m sort of curious to know, as a young dad, you know, the population that we’ve created, this special father’s network for, to create these amazing resources for these young dads like yourself or closer to the beginning of their journey, their fatherhood journey, um, what are some of the fears you have as a father raising a child with special needs?

Joe Lofino: Yeah. Is he going to be accepted? Is he going to have any friends? Will he be able to talk ever? You know, is he going to be able to learn things? Am I going to be able to teach him all the stuff that my dad poured into me? You know, what what’s he going to do for work? When, when he gets, I’m not going to live forever.

I know that for sure. Jeez, life is short. And so how. What can I do now that is going to help this guy out as much as he can, you know, and yeah. I mean, gosh, is he going to get married? Is he going to be able to drive a car? Uh, all of these questions have no answers.

David Hirsch: Yeah. Well, I’m sort of curious to know, because you know, your mind is racing ahead, right?

Like you’d said, you know, about all these things in the future, the experiences like you shared with your dad, you know, um, will they be able to learn, we’d be able to drive, you know, will they be able to. Be married to somebody, uh, have a independent life. Well, they do to support himself. I mean, you know, you can just sort of go through the chronology of life as we know it.

And, uh, you know, you almost have to like train yourself. To say, Hey, I can’t change the past. It is what it is. I can anticipate what’s in the future. But if you get too far out in the future and you start worrying about those things or anticipating, you know, that’s not a good use of our time and our energy.

So you want to be in the present, you know, anticipate the near term, right. And do everything you can to make the most of every step, but it takes an extra discipline to do that. And, um, I’m wondering if there’s any meaningful advice that you’ve gotten, either from the pediatricians, the geneticists, or maybe those that you’ve met in the fragile X community, you know, in the last year or so that have been

Joe Lofino: helpful.

There’s sometimes there’s like sensory overload for them. So it’s being very gentle in that sense of, uh, you know, if I’m playing hard rock music, Uh, and I, I can ver, you know, very, uh, be paying attention to the kids, you know, and if they’re, you can tell if they’re not really getting it, or if you tell them to do something, understand that they’re probably not gonna actually get it, or it might take them a few seconds or maybe they’ve heard you, but, uh, they’re just not able to really.

Listen in that sense of things. So, uh, you know, don’t throw food on the floor and that stuff, uh, they might not really get that.

David Hirsch: Okay. Well, I think it is important to be patient with all kids, right? Because they are learning and, uh, you know, it’s all a bunch of trial and error at some level, you know, as far as behavior is concerned and maybe just knowing what their predisposition is as a result of the anticipated outcomes with fragile X.

No, you just need to be patient and, um, You know, try to put it all in perspective, not have any unrealistic expectations, don’t lose your expectations, but don’t have unrealistically high expectations,

Joe Lofino: right? Yeah.

David Hirsch: Early intervention. Yeah. It seems to be the thing that, you know, most people are focused on with super young kids and, you know, you’ve had your kids diagnosed.

So that’s a big step in the right direction. Do you have some sense for what you’re up against and they’re going to be transitioning to the world of ups. Have you gotten a taste of that or, um, sort of a preview of what that’s all about or not?

Joe Lofino: A little, a little bit, right. An individualized education plan.

Uh, so we’ve got Joshua enrolled already at a school locally that has an IEP for him. And they’re geared towards special needs. So, uh, so yeah, just a small taste so that he was going to start on his third birthday, which, which would have been a few weeks ago, but with the whole Corona virus thing, they kind of postpone things.

So he’ll be starting, I believe this fall.

David Hirsch: Yeah. Well, it is sort of unusual with the coronavirus, how we’ve all had to make adjustments and, uh, a lot of parents and maybe this is a little bit. Yeah, too early for you because this would, we’re talking about preschool, right. You know, as far as Josh is concerned,

Joe Lofino: you’re going to have

David Hirsch: to sort of pick up the Slack.

Mom and dad are going to have to pick up the Slack, at least in the short term to be doing things at home that are developmental in nature. Because, you know, we’d like to think it’s only going to be a couple of weeks, a couple of months, but you know, it could turn out to be, you know, not just the whole summer, but you know, maybe under the fall, you don’t know how things are going to transpire and you don’t want to put off what you could be doing today.

Not like. Five six hours a day with your kids, but you know, fun things, right. That you might be able to do that would be age appropriate, developmental appropriate for them. So, uh, my heart reaches out to you guys to be thrust in the situation, but it sounds like you’ve made yourself aware of and are trying to take advantage of some of the early intervention and then soon to be IEP type resources.

Joe Lofino: Right. Exactly.

David Hirsch: Yeah. I don’t want to focus on the negative, but I just want to be realistic about this. What are some of the biggest challenges you’ve faced as a dad? With these diagnosis, these sort of, what I think of is pretty heavy, you know, diagnosis. Has it affected you or what impact has it had?

Joe Lofino: Yeah, no, not at all, man.

It’s changed every single part of me. Uh, it has made me more patient. Yeah, it has made me put my faith, uh, strengthened my face. It’s kind of crazy to say that you would think it would, would make you turn the other way, I guess, but. You know, gosh, it’s, it’s caused me to dive head first into God’s word and have scripture written all over my heart.

So, yeah, but it’s affected me a lot, you know, I’ve, I’ve woke up late for work a lot, unfortunately. Uh, you know, w which I would say it’s kind of changed my character in a sense. Which I’m still working on, uh, getting back to where I was, but, you know, I think I was working kind of for the wrong reasons, in a sense I, I was eating great, you know, uh, just everything on point.

I’ve never really struggled with depression and anxiety, but now I can relate to what people go through. Uh, and it’s a really dark place to be. Uh, it feels like you’re isolated and all alone, but there are so many people going through so many hard things, you know, through all this. I see, I see. God’s hand working, you know, so she’s, I mean, if you ask if it’s changed me, man, it’s, it’s outrageous.

What God’s done, uh, through all this, you know,

David Hirsch: that’s very encouraging to hear you say that, uh, that it’s actually a strength in your face as opposed to questioning your faith. Um, but I do recall, I think you mentioned in a prior conversation that, you know, you’ve. You had some real challenges yourself, you touched on depression.

Um, I think you actually, mental mentioned you had a mental breakdown and maybe some suicidal thoughts. And I’m wondering, how is it that you’ve gone from sort of the darkness, the depths of those feelings to where you are today? What is it, if there’s one or two things that you could point to that might be revealing to others that might help them, you know, at, at that point in the journey that you were at.

Joe Lofino: Yeah. So I was a, I was 28 years old last year. And, uh, let me just start at the start. You know, I got this diagnosis of a child that’s got fragile X mutation. All right, I’m going to solve this thing. Yeah. I’m going to become, I’ll become a genetic doctor. That’s it. I’ll figure out how fragile X works and I’ll fix this thing.

And, uh, Man, it’s something you can’t slap duct tape on. You can’t put wood glue on it. Uh, you can’t fix it. Uh, you know what overnight. Great. Uh, and it’s something that man, I, I’m not a medical guy. And, uh, so, uh, after a couple months of that, you know, go, go and play. And through that, I started to do some bodybuilding and I started going to the gym.

I was hitting it every day. Almost. I was going like three to four times a week. I thought, Hey. Yeah, looking back. Geez. You can see, I was trying to build up myself physically and you know, yeah. God’s word was in me. I was like leading worship at the time at the church. And, uh, geez, I don’t want to say that.

Tried to hold it all together, but I did. And, uh, you know, there’s, there’s things we don’t have control over now. There’s also people that say things. Before they, before they know what they’re saying, uh, you know, and that’s, that’s part of us being empathetic, you know? Geez, we’re going from a place of not knowing anything about special needs to now.

You’re the dad and it’s all on you and th the weights on your shoulders. All right, buddy. Saddle up and let’s go. Uh, and you’re, you’re kind of trying to figure it out as they used to say, um, you’re trying to chew gum while you walk, you know, or, or talk or whatever. So, I guess, taking you through that deep, dark depression that I, that I went through and man, I, I know depression just seems like it’s so cliche, but I just think a lot of people are going through it because our faith is in the wrong things.

Our faith is in the things that. Uh, we can’t control. We’ve got no control over the things that are outside of our own mind. Uh, and even controlling the things in your mind takes work. Uh, you have to work at training your mind to think a certain way. Like if you’ve heard that older, the old parable about the wolves, right?

With the, uh, you know, the old Indians sitting at the bonfire and he says, Hey, uh, Yeah, you got a good, good Wolf and a bad Wolf. One’s going to survive. Well, it’s the one that you feed. And so if you feed your evil thoughts and desires and addictions and all those things, then that, that Wolf will take over.

You. But if you feed the good one, he’s going to protect you, man. He’s going to get strong. You know, that, that to me is that that’s Jesus, you know, is he’s a, he’s a strong guy in front of me, uh, you know, pushing all the evil things out of the way. So, uh, so yeah, last year in the fall, I, I started to feel disconnected from my wife and I’m trying to work really hard when I’m showing up to work late.

And, um, my boss has being very, um, Very understanding about things. Uh, what sent me over the edge was a guy. He was kind of a confidant to me and I said, Hey, uh, you know, yeah, he’s going to be, uh, having big ears and, uh, you know, maybe a bigger forehead and flat feet and those sorts of things and, uh, physical traits.

And I think the guy meant it as a joke, but he says, yeah, also he’s going to be like a Hobbit. Oh, geez. I said, mom, man. I said, geez dude. Oh man. So that took a while to get over it. But you know, control someone else’s words that they say that combined with sleepless nights, you know, the kids were screaming through the night.

Uh, Joshua was, was getting two hours of sleep at a time, multiple hospital visits last year in 2019 with the flu, the kids, like not for myself, but for the kids, but Josh had like three viruses at a time. They said, and, uh, just all these crazy, crazy, crazy things happening that combined with moving to a new town.

Uh, so we, we sold our house in October. No, we’re September moved to this new house. It’s pre civil war. David. It’s a brick house. That’s, uh, everything’s super old in it. So, uh, you know, just, just those kinds of things. Like where am I at, man? What, what is going on? So yeah, I started thinking, you know, it’s better to just die and actually it’d be fine.

I’ve got a life insurance to cover me and all that stuff and yeah. You know, the, the kids and wife they’ll be fine. So I, yeah, I was entertaining that thought for a bit, but you know, it wasn’t ever something that I would, I’d say I have an attempt or anything, but I definitely had the ideations, uh, without a doubt.

I mean, they were every day, every hour. And I just sunk into this, this place where, uh, I really, really believed the world would be better without me. And, uh, jeez. Wouldn’t. Isolated selfish thought that is, but when you’re thinking it, it’s just different, it’s more real to you then. So yeah, I ended up going to a counselor therapist or whoever.

Yeah. So I started kind of scared myself and, uh, was really afraid that, uh, I was going to do something. So my counselor told me. Hey, you’re not leaving this meeting without going to the emergency room. And so I said, well, what if I just go home? And she said, well, the cops will be there at your house. Then I’ll send the police there because you need to go to the emergency room.

And I said, okay. Alright, alright, I’ll go. So I went to the emergency room, we started talking through things and, uh, I decided to check into a. Psychiatric facility, I guess you would call it. And, uh, it was three days that I was there. Uh, no contact with the outside world. I actually met just a few people in there too.

And, uh, I still am following up with them on Facebook messenger and, uh, you know, encouraging them and stuff and their walks. The term from there has not been very easy. And I can say I’m still, still battling with it. Uh, but

I guess a couple of things, I was being too hard on myself. I was trying to control things. I have no control over. Uh, also didn’t have God’s word speaking to me. And, uh, I put my value very, very low. So, uh, you know, we’re saved sinners really. So, but you don’t have to live in and being a sinner, you know, God’s our savior.

And so he. Yeah, he makes us a new creation.

David Hirsch: Well, I’d like to just say thank you for sharing. Thank you for being so open and authentic about your journey. It’s all very fresh. I can tell it’s all happened within the last year or two. And one of the things I admire most about you, Joe, even though we don’t know each other well, is.

That you’re being very transparent and that is part of the solution and isolating yourself and bottling it up is part of the problem. And the sooner that you can deal with these feelings and put them in perspective, you are steps closer to being more well grounded and a firm footed not only for your own benefit, because if you’re not strong, you can’t be there for your wife.

You can’t be there for your kids, but to. Be there to be the husband that you want to be, be the dad that you want to be and be the leader in your family, which is easy to talk about. But like you emphasized, you can’t control what people say or do. So if that upsets you, then you need to figure out how to get beyond that because you’re not living.

Of the world right here, living, you have to live in the world, right. That we’re in. And, uh, you know, just to put it in perspective. So I admire your transparency and your, our faith, right. Which is continuing to grow. Right. And my sense is that as the days, weeks, months go by years, go by that, you know, you’ll see the strength, you’ll get your strength back and you’ll be as present as you possibly can be for your family and then beyond, right?

Because you have this. Interest in service service above yourself. And, uh, you know, I just want to encourage you to continue to surround yourself with others that have been there and done that. And I’m hoping that that’s part of what the special fathers network is all about, which is, you know, learning from being in a association with, uh, these dads.

Joe Lofino: Yeah.

David Hirsch: And, um, while it might be helpful to make the connection with some of our dads who have been raising kids that are quite a bit older than yours who have fragile X, I think it goes well beyond fragile Luxe. It’s just a diagnosis, right? And there’s so much to learn from other dads who have walked the journey and have also had their faith tested like you have.

And, uh, You know, you know, you realize that, uh, you know, while it’s overwhelming and what you described sounded quite overwhelming.

Joe Lofino: Right.

David Hirsch: You know, it’s not the first time somebody has been overwhelmed by life’s challenges. And, uh, you know, it’s very humbling, right. To come to the realization that, uh, maybe you don’t have the strength personally, you don’t have the answers and you have to.

Open up, which is not a natural thing for most men to do. So I just want to say thank you for sharing. Thank you for being part of the Special Fathers Network. I’m wondering if there’s. Any specific advice that you might be able to offer up and above what you’ve just shared? Hmm. Uh, with another dad, a young dad, like yourself who might be struggling with the diagnosis or early, uh, impact, um, like you have so that they don’t.

You know, go to the depth that you have, that they might be able to sort of bridge that gap and somehow hop over that Chaz.

Joe Lofino: Yeah, sure. There’s there’s a ton of things I can say. Uh, first things first is while I was in that facility, somebody told me, uh, I forget her name, Ashley, maybe she was a, a social worker, awesome person.

She told me, Joe, every person in this place. It’s only one tragic event from checking themselves in this place too. So that gave me comfort in a sense of, Hey, we’re all human. Everybody goes through things. Uh, everybody’s got different struggles and, uh, gosh, that’s, that’s part of being brothers and sisters.

Isn’t it? That we lift each other up when we’re down. Absolutely. So, yeah, like, you know, to encourage some guys out there, man, your family needs you more than, you know, right now, somebody out there is probably going through what I was and I pray that they, they hear this, uh, That man, more than ever today, even back in biblical times, right?

You look way back in antiquity. There were still guys leaving their families behind. Then God talks about the widows and the orphans all the time. And how was your care for them? And so, uh, gosh, dads are really needed. Uh, It might not seem like it. And every small thing you do might seem undervalued, but still do it.

Uh, like the Kelly Kramer guy told me, you know, we’re the kind of guys that pick up the trash on the ground at places. And we’re the kind of guys that show up to a place and leave it better than when we got there. So every small thing, you know, your child might not be talking, maybe they’re nonverbal, uh, you’re still going to love them.

And, uh, it doesn’t matter if they can talk or not. It doesn’t matter what word they can say. Uh, you, you’re still gonna be there for them. Think of it this way. There’s Psalm 46 there at the beginning. It says as God is our refuge and strength and ever present help in trouble. And so I see. Uh, us guys, you know, w being made in the image of God and having the Holy spirit living within us, we can be refuge and strength for other people and ever present help in trouble said a different way.

In second Corinthians, it says, praise be to the God and father of our Lord Jesus Christ, the father of compassion and the God of all comfort who comforts us in all our troubles. So that we can comfort those in any trouble with the comfort we ourselves receive from God. It’s pretty wordy. I know, but the word that keeps being repeated there is comfort.

And so God comforts us. He has compassion on us. Maybe we have compassion on others. I mean, we have the compassion on our families that when we show up, we can shut off our phones. We can throw up through our phone in the kitchen and just leave it there and leave work behind when we get home. Uh, that you know, and I know it’s a lot of weight to put on yourself, but give yourself some grace to give yourself some grace.

So we don’t really need to look years and years ahead, who knows if they’ll drive, who knows if they’ll talk someday, does any of that really matter? What matters is that we’re loving without. Any conditions, uh, it doesn’t matter what you give me, let me give you everything. You know, my arms are just open giving, giving everything I’ve got, you know, as Paul would say, somewhere in scripture, it’s to die is gain actually.

And the present sufferings that we’re going through is nothing compared to the weight of glory that awaits us ahead. But when we get to heaven and we got those crowns, may God be announcing us as, Hey, you know, that time that, that you were pushing that car with Joshua watching yen and you were just playing with cars on the floor with them and teaching them the word vroom, or throwing a ball with them and teach them the word ball or something.

So simple. Uh, but man, what you do matters, everything you say and everything you do it, it does matter. And uh, God sees everything, you know, so even the small things and, uh, you know, jeez, he says his grace is sufficient for us.

David Hirsch: Yeah. Well, thank you for sharing some really, really good insights and some pearls of wisdom from such a young guy like yourself.

So thank you again for sharing. Yeah. I’m sort of curious to know, um, You learned about the special father’s network online, from what I remember. And I’m sort of curious to know if you could identify one or two things no more. What is it that you’re looking for from the organization? Uh, what, what, what’s your takeaway?

What, what are you looking for?

Joe Lofino: You know, I guess, uh, encouragement and. Jesus. It’s hard to say encouragement and wisdom from guys and, uh, you know, being able to, I guess, know that you’re not alone.

David Hirsch: Good. Well, I’m hoping we can provide you with that without too much heavy lifting. Thank you. Um, if, um, somebody who wanted to learn more about your situation or contact you, what would be the best way about doing that, Joe?

Joe Lofino: Oh yeah. Well, I’m on Facebook. That’s pretty much where I hang out. Uh, I’m also on Instagram and LinkedIn and all that stuff, but really Facebook’s the best way this, they want it to reach out. It’s just Joe Lofino. I know. And they should be able to find me on there.

David Hirsch: Okay. We’ll include those in the show notes.

Okay. So thank you for taking the time and many insights. As a reminder, Joe is just one of the dads. Who’s 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 or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.

Tom Couch: 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 501 c3, 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. I would really appreciate your support. Please 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.

Joe, thanks.

Joe Lofino: Super privileged.

Tom Couch: Thank you for listening to the dad to dad 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 would 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.

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.

Joe Lofino: 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.