083 – Jon Heckert Makes it Possible For His Son With Special Needs to Race and Hunt Among Other Activities.

Dad to Dad 83 – Jon Heckert Makes it Possible For His Son With Special Needs to Race and Hunt Among Other Activities.

Jon Heckert: There’s nothing that your child can’t do. We don’t say disability. We say diffability durability. It’s just different. Normal is a setting on a dryer. That’s not what your life is. So, so we’ve really taken that mentality into our lives. Camp is not a word that we use in our house. The key piece of advice though, would be don’t treat. Your child any differently than you would at normal child? Obviously they have CPS. They have special supports that they need.

That’s special father John Hecker, John and his wife. Doris are parents of a son Jackson, who is diagnosed early in life with special needs in the Heckert household. The word “can’t” doesn’t exist.

John makes sure Jackson competes in races. He takes him hunting. John is indeed. A special father and we’ll hear his story on this dad to dad podcast. Here’s our host David Hirsch.

David Hirsch: Hi, and thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of children with special needs presented by the Special Fathers Network.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. Great way for dads to support dads, to find out more, go to 21stcenturydads.org.

David Hirsch: And if your dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com, groups and search dad to dad.

Tom Couch: And now let’s listen in as special father John Heckert speaks to David Hirsch.

David Hirsch: I’m thrilled to be talking today with John Heckert of Madisonville, Louisiana, who is a father of a son, and he works in recruiting. John, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Jon Heckert:  Pleasure.

David Hirsch: You and your wife. Doris had been married for 15 years and the proud parents of a son Jackson, who was diagnosed from the time of birth with special needs.

I’d like to start with some background. Where did you grow up? Tell me something about your family.

Jon Heckert: So I grew up, I grew up in Prairie, Louisiana. So not far from here, Baton Rouge within Baton Rouge for probably a total of about 20 years also lived across the river and Placa men and recently moved to Madisonville due to a job change.

So grew up in this area, never lived outside of the state of Louisiana where I we’re very rooted here in Louisiana. And I guess a little bit about my family. So obviously you mentioned Jackson. Um, so Jackson, it is a, is a true blessing. Is somebody that’s, that’s taught me more about myself than I ever could have learned any other way, taught me to really treasure the small things in life.

When it was the first time he rolled over, or the first time you spoke and a lot of things you take for granted, right? The first time he wrote on the wall, right? It was, it was like, this is experience where it’s like, you want to be mad, but you can’t because you know what went into, Hey, it took this much effort to get it right on the wall.

So that’s really kind of bends at the basis of, of our family has really been Jackson. But at the, we, we enjoy obviously, um, getting out in the outdoors, getting, uh, getting him involved in activities, uh, and making sure that the only limitation. Uh, if his life is what he puts on himself.

David Hirsch: Excellent. So, uh, when you were growing up here in Louisiana, did you have siblings?

Jon Heckert: I did it. So I have an older sister who lives in Oklahoma and I have, uh, had a younger brother and he actually passed away a couple of years ago due to a heroin overdose. So, so obviously, um, definitely treasurer, uh, the time we did have. And it puts a new perspective on, on life when you don’t go through a tragic thing.

David Hirsch: Yeah. Well, I’m really sorry to hear that. So. Is your dad still alive, but dad is still alive.

Jon Heckert: My mom actually passed away in 2008, um, to non Hodgkin’s lymphoma. Um, but my dad’s still alive. Uh, and then obviously, um, I have a stepmother now as well, and I got to two step sisters as well. So some things, uh, get taken away.

Other things get added in.

David Hirsch: Yeah. Well, sorry to hear your mom passed at such an early age. I’m wondering, um, What does your dad, or what did your dad do for a living?

Jon Heckert: So my dad, uh, for most of my, uh, most of my childhood, he was an educator. He definitely had a lot of different jobs. Uh, if you came to me to, to chat, I think he had probably 20 different jobs that his whole life, his life, um, most of them kind of centered back around education.

Um, he was actually an educator in the prison system for a while. Um, my mom, uh, same thing. She was a teacher her whole life. Uh, so she taught special ed. Um, my dad was special ed certified as well. Um, but then he spent a number of years in the correctional system, uh, working for the local men’s and women’s prison here, here in town.

Um, and then my mom actually finished out her career, um, as an educator and the criminal justice system, the juvenile justice system. Um, so she was the, she led the, uh, kind of the intake and assessment of, uh, of kids when they came in and kind of what their, what their needs were and kind of where she, where she was going to place them and make sure they got the appropriate, appropriate programs and whatnot that they could be offered.

David Hirsch: Well, one of the things we have in common is that our moms are both educators. My mom taught, she had a traditional career. She didn’t do all the things that you were talking about your parents did, but she taught them in Chicago public schools for 38 years, started in second grade. Went down to first grade, and then she taught special ed for the last third of her career.

Jon Heckert: And she had the patience of a Saint. That was definitely my mom, my dad, not as much, not as much patience, but, uh, but when it came to, uh, he actually taught special ed for, uh, the last time he was in, he was, uh, in the education system. He taught special ed for the last probably four or five years. Uh, his, he had tons of patients for, for the kids, but no patients from the school system.

So it gets to this, all this paperwork, all this stuff you’re ready. Can we do, it’s taken away from what I need to do for these kids. It was definitely interesting to have his perspective, especially in the situation we’re in with Jackson and, and having, having some of those similar challenges. So it was really cool.

The first time I invited him to one of our IEP meetings. So he knew everything to ask me.

David Hirsch: He was able not going to pull one over on him.

Jon Heckert: Most definitely most often. So my mom, when she was in beverage at the public school, she actually worked for me the appraisal. So she did all of the, uh, all of the intake for, for all the gifted and talented, as well as all the special ed kids that, uh, to the, to the system.

So.

David Hirsch: Pretty neat. So how would you describe or characterize your relationship with your dad?

Jon Heckert: And so my dad and I, we, we have a, uh, I would say probably a unique relationship. My dad and I growing up, I played a lot of sports, so it was a lot of me and my dad traveling around, going, going into all different, uh, I played soccer, so I was on a travel team.

So it was always kind of him and I kind of travel on traveling all over the place. Um, so I probably have a much closer relationship with my dad than either my sister or my brother. Uh, definitely a unique relationship to, so, uh, one that was more like a friend than it was like a, like a fire, obviously, man, he was still my father.

He was still, he still had to have the handle discipline and whatnot and make sure that I didn’t do some of the stupid things that I did, but he had a lot of grace for me as well. And it was, it was really a good relationship where we could challenge each other and that was okay. Um, but we actually, I actually worked for him for a period of time, too.

So, uh, during college we actually owned a, uh, injury manufacturing facility. So that was probably the, the most stressful time. Um, but, uh, but definitely one where we both learned a lot about ourselves and how we can interact with each other.

David Hirsch: Excellent. So what do you think the most important takeaways are from your relationship with your dad?

Is there something you always sad or dead that. No, you’ve tried to emulate

Jon Heckert: for me more of a combination of my mom and my dad. So they were definitely, they definitely balanced each other out. My mom was a worry wort and she worried about every single thing all the time, but she was very compassionate and very caring.

And my dad was usually a little more strict, but also kind of the more flat by the superior parents that didn’t really matter. Um, so it was this, it was this unique balance where, when he had to be very strict, he was strict, but for the most time he was, he kind of laughed joke around, had a lot of fun. So, so for me, I think I’ve gotten kind of a balance of the two with them.

Um, so, so it definitely totally changes to the way I think about things. Um, but when it comes to, uh, the activities, the biggest thing that, that. For me has been, has been critical to how I treat violet stewardship with Jackson, um, is making sure that if it’s something he wants to be able to do, we figure out a way to make it happen.

David Hirsch: So you had mentioned that. You went to school at LSU and I’m wondering, what type of degree did you take and then where did your career take him?

Jon Heckert: So, uh, so I have a very unique, uh, school story. So, um, I started out at LSU. I partied the way too much and I didn’t get very good grades. My first year I lost my scholarship, had to pay for school and I learned that, okay, Hey, school isn’t for mommy and dad anymore for me.

And so I changed schools a little bit, went to BRCC, local community college. Um, and took a few courses, kind of got my grade and grade point average back up, obviously met my wife there as well. And then we kinda both transferred back to LSU. And, uh, when I got to LA back to LSU, they’re like, okay, you gotta make a four Oh three semester to get back into school of business.

Cause that was what I was going to do is the school of business. Yeah. That’s not going to happen and scale by the four points three semester, like yeah, that’s probably, or, um, so just so happened. My dad was actually pursuing a doctorate, so I took kind of the business and the education portion with both my parents being educators.

Um, and so I got a degree in human resource education and workforce development. So it kind of took the, uh, the education of the business kind of put it together. Um, so officially my degree is human resource development. Then from there, obviously I finished school, did good with the rest of my grades and at that point, okay.

I started and I was working for a liquor company during college, which probably wasn’t a good idea, but actually my first job out of college was as a transportation manager. And then, uh, obviously. Um, I ended up in HR because, uh, my wife got fed up with me having to, uh, to be out late, waiting on drivers to come back.

And I went home, came by one night when she wasn’t feeling well. And she’s like, this guy calls you it’s cause I sent your resume. Um, and so that’s how I ended up in human resources. Um, and I’ve been doing that for the last, uh, last 15 years. Okay.

David Hirsch: And where do you work now?

Jon Heckert: Uh, so now I worked for introduce local utility company.

And I run a talent acquisition. So basically how the company acquires talent,

David Hirsch: you and Doris had been married for 15 years. I’m sort of curious to know how you met.

Jon Heckert: So we met actually at, uh, at community college. Uh, she happened to be, uh, uh, just sitting outside and she had classes with a couple of my friends, um, and that’s kinda how we got introduced and we ended up having some classes together.

Um, and we started off just to, just as friends. I was in a committed relationship. Um, and, and that kind of went South by then. At that point from there, we were just really close with friends. And obviously everything kind of, kind of led forward from there.

David Hirsch: So let’s talk about special needs on a personal level and then beyond, so I’m wondering before Jackson was diagnosed or born, um, if you or Doris had any experience with the special needs community?

Jon Heckert: Um, not specifically outside of what my parents, uh, but the in special educators have been. But not a whole lot of direct interaction.

Um, didn’t have any family members or everything. Uh, but, uh, I did my, uh, sister, her first child, um, was born at 24 and a half weeks. Okay. Jackson was 17 and a half pounds. So like 15 weeks premature, he was very premature. He was a size of a Coke bottle. Uh, only like a 20 ounce Coke bottle when he was born.

Um, and so he was in a NICU for a long period of time. Um, and fortunately he’s perfectly fine today. It looks like a rural Kansas boy. I mean, he’s taller than I am. Uh, I think he’s 19 years old now. But that was really the only exposure that we had to anything outside of my, what we knew in the local community and stuff like that.

Um, but the way the community for around here, um, it’s, you didn’t really see individuals with disabilities out in public, uh, in the Baton Rouge area. It just wasn’t very common.

David Hirsch: Okay. So what is Jackson’s diagnosis?

Jon Heckert:  So Jackson was diagnosed, uh, with Arthur  multiplex, congenital. Um, AMC for short, um, and basically what it is is it’s a low muscle tone and type joint.

So it’s somewhere to club feet, all it affects it’s his entire body. Um, so obviously it was his primary challenges are, um, gross motor skills, uh, due to the lack of muscle. Cognitively overall health wise, he’s, he’s in very good shape. Uh, cognitively he’s probably a little bit smarter than his own good. Um, he’s incredibly intelligent, um, which makes it challenging to be mom.

Um, but, uh, but definitely is a, it’s an interesting dynamic.

David Hirsch: So, did you know this from the time of his birth or when was the diagnosis, man?

Jon Heckert: Yeah, so we actually found out, uh, at, uh, 20 weeks gestation. So we went for our, uh, for our 20 weeks on the ground. We went in and got a normal sonogram and then it set us back out to the Altona waiting room.

And we sat there for a long period of time, uh, as they were consulting with other doctors. And then they sent us to a really scary doctors, uh, to go get the level three sonograms and whatnot. Um, so that was a very, a very long day. Uh, but we found out at 20 weeks, uh, I don’t know if that’s better or worse because you get to prepare for it then.

Right. Um, and you spend those 20 weeks thinking about, okay, Hey, what is life going to be like? And what, what was my thought of what I thought I was going to get versus what I’m going to get now? Um, so that was definitely, uh, definitely a bit challenging. We probably spent the first week. Probably researching and then talking to her and crying every evening about, okay, what, what are we we’re going to have to do?

Just the stress level and the, and then they’ll never be able to do this or never be able to do that. And at some point we just kinda said, Hey, you know what never is not as not an option. And so we just had, we just had this, this of a supernatural change of heart where it’s like, you know, this is, this is not, this is not how it’s going to be a cancer, not a word that we’re gonna use.

Um, we’re not gonna treat him any differently than we would. Any other kid. Um, and, uh, we’ve just gotten to the point where I want to do something. We’ll figure out how to do it.

David Hirsch: That’s remarkable. I’m wondering if there was any meaningful advice you got. Early on either before Jackson’s birth or perhaps subsequently it’s allowed you to put everything in perspective.

Jon Heckert: What I would say is probably the key learning we have. So my wife, as we were preparing for him to get here, she found a support group online, um, AMC CSI. So it’s an organization that supports this particular condition and research and whatnot. So it’s another nonprofit. And so she was talking to all these late dates all the time.

And there was like one dad that was on there, um, who was really involved. Um, and, and it’s six. She was like, Hey, we’re going to Dallas to go to this conference to meet all these people that have been talking to on the internet. So I’m like me, I’m like, All right, like, sure.

David Hirsch: This is before the accident.

Jon Heckert:  This was after right after he was born.

Um, and uh, we met a lady there who it’s really become a really close friend. She has the same condition. She was a little bit older. Um, I was who she was that she was an adult probably probably early to late thirties. And she said, don’t treat him any different than you would. Any other kid. Um, and we had already kinda, kinda established that, but that really helped reinforce that, that, you know what, whereas at the same expectations we would have for any, for any other child, um, and work from there.

And that’s really how we’ve laid out our life and our expectation is, and kind of how we support and mentor and grow and obviously discipline everything else, just like we would any other normal kid.

David Hirsch: Yeah, well, what great advice. And I’m wonderful that there was a support group in place, right? Cause not all special needs have support groups or foundations or, you know, people that are meeting and sharing ideas and exchanging one of the really cool things.

Jon Heckert: So we’ve gotten involved in that and we go to that conference every year. That’s our, that’s our summer vacation and it’s surprising how many teenagers and adults that will come to that conference for the first time. They’ve never met anybody else in the same condition. So his condition is relatively rare.

It’s more than 3000 live births. Um, and it’s oftentimes confused with other things, not getting an appropriate diagnosis or to be misdiagnosed, but there are oftentimes where, Oh, I’ll be a dad or a mom that is the first, every time they’d come to a conference and they’ve never met anybody else that had the same condition that don’t know what doctors to go to.

David Hirsch: Um, so they’re really behind

Jon Heckert: no most definitely stuff with oftentimes shifts.

David Hirsch: Yeah. Well, I think the internet is not all good are not all bad, but in the context of what we’re talking about, there’s huge upside for people to connect and learn, you know, as much as they can, but it does take an initiative, right?

The parents have to really seek out resources and, uh, You sort of feel bad when you meet people that aren’t plugged in or aren’t availing themselves of the resources or making those important connections because every year that goes by is another year that, you know, you may have lost by not engaging at a earlier age, on behalf of your child.

Jon Heckert: No, most definitely. And you see it regardless of what condition I’m in, uh, doors for a period of time work for families helping families, which is one of the local organization that kind of helps. Those individuals navigate that system. And, um, that’s definitely something that, that we’ve. So I’m into the systems that are in place oftentimes are very challenging to navigate.

Make sure you get the appropriate carrier. Um, and especially when you’re dealing with a condition that has very specific needs and every kid is a little bit different. Um, if you don’t have those resources, you don’t know where to get those referrals. You don’t have the initiative because it’s something that maybe you’re denying as an issue.

Right. And you just want to. You kind of put your head in the sand and don’t worry about it, then it’s that much further along that you really have to have to really push to make up someone. I lost her.

David Hirsch: So were there some important decisions that you’ve made as parents?

Jon Heckert: So I would say probably the most important decisions we may have been about surgery, so he’s had, um, and then ultimately, um, the decision for him to move into the wheelchair versus trying to walk.

So he had major surgery in 2011. I mean, basically that was to allow him the ability to walk, but he did walk for a period of time when he was born. We were told you will never get out of the crib if he even lives. If he does, I’ll never walk Brian. Um, so it was really, it was a really bleak prognosis when we were, when we were first diagnosed and kind of first going through that.

And obviously, I mean, we still are faced and said, I, you know, this is, this is what we’re going to do. We’re going to continue to push. Um, and whatever, whatever God gives us is what God gives us. Obviously when we got to the point where, okay, you’re trying to help him walk and everything. We came across a couple of doctors through the car, so we were going to, um, and we’re really giving some, some, Hey, you know what?

These are some things we can do that. I feel he can walk if we do. So that was, that was a big decision because obviously, I mean, at that time he was four and a half years old. Um, so going, uh, undergoing major surgery where he had multiple osteotomies. Uh, where they’re shortening bones obviously had several muscle releases and whatnot.

So he was, uh, he was under surgery for probably four or five hours where they successful. They were successful. I think they’ve done very well. Um, he was able to walk for a period of time, um, and it just got to the point where it was, it was challenging for him. Um, and so, so when we got to the point of, you know, we need to make a decision as to, as to how we’re going to handle his mobility long term.

Um, it just got to the point where it’s like, alright, what do you want? And they really let him help make those decisions. Because again, I mean, when you’re, when you’re five and six, it’s okay, Hey, that’s kind of our decision. Um, but once you get a little bit older than that, it’s like, you know what, Hey, this is your, this is your life.

You gotta do. What’s gonna, what’s gonna work for you. So what do you want now? The one thing he will, he will not use a power chair. Um, he does not want a power chair at all. Uh, he wants a manual chair now we’ve got a power assist to help him with, with, uh, with the propulsion. Um, but he doesn’t, he doesn’t want to use a power chair with a joystick.

Doesn’t like him never has a, we’ve tried them a couple of times that he doesn’t want anything to do with it.

David Hirsch: So that, that would allow him to control the chair himself.

Jon Heckert: Why he actually controls the chair, the chair he has now. So the manual chair that he has, so it’s got a Bluetooth connected bracelet on his wrist.

Um, and he taps it and it engages the pushing. And then he uses his hands or his rib cage to steer. Um, so he, he gets around just fine. Um, obviously he can push himself. Uh, it’s a little bit slower, but, uh, but so we got the smart phone, that’s called a smart drive. Um, and basically he uses that and he goes to school.

He does all the, all the mobility. So for him, the chair gave him the ability to be with his peers and to keep up with his peers because he could walk, but it was going to be cumbersome. It was going to be slower. Um, and even with a lot of developers are still gonna need assistance. You’re still gonna need braces, probably a Walker to make sure from a safety standpoint that it was going to be okay.

Um, and so he decided that he wanted the chair. So we, we supported that decision and that was, that was challenging, right. Because you dealt with, uh, okay. Hey, are we giving up? Right? And

David Hirsch: walking out of the surgery

Jon Heckert: to correct. We did all these things. And so, so we, we, we battle with this faith. I was like, all right, God, we went through all this.

We got to the point where, Hey, you know, we felt you were telling us to go this way. And the response we got back and I, we kind of felt my heart was, Hey, I’m still the same guy if he’s in a chair. So it definitely doesn’t really matter. It’s like, we went through that and that’s part of his testimony and that’s part of who he is.

And it’s part of, part of your journey, but I’m the same guy. If he’s in the chair, I’m saying, God, he’s walking.

David Hirsch: Did you say he had more than one type of surgery or were those surgeries all related to us?

Jon Heckert: He did. He did have several sorts of at six days old. He had bilateral inguinal hernias, uh, that were repaired.

Uh, so, uh, we do, we no longer celebrate Valentine’s day. Um, so he had surgery on Valentine’s day. So, uh, we both sat in the waiting room and said, all right, Hey, if he makes it through the surgery at six days old that’s Valentine’s day enough for the rest of our lives. So we haven’t, we have a little bit of Valentine’s.

They said maybe flowers, maybe a card I’m obviously happy Valentine’s day. Cause I’m a cheek, whatever but gifts. Now, when I, when I do a guest rental it’s special dinner or anything like that, that was, that was celebration enough and good enough for the rest of our lives,

David Hirsch: not to focus on the negative, but I’m wondering what some of the bigger challenges have been for you indoors.

Jon Heckert: So some of the bigger challenges, I mean, struggle with some of those decisions where we’re obviously the big challenges. I struggled a while with the child that I thought I was going to have. Versus the child that I did have because obviously, I mean, I was, I was in the sports. Um, I love the outdoors, love fishing.

Um, and those were things that for a long time, I felt he would never really be able to do. Um, so I struggled with that for awhile. Um, and I definitely had some anger challenges, um, and, and went through some periods of time where I was, I was definitely challenged with, with kind of my acceptance of where things were.

The other thing that I struggled a lot with was accepting help. Um, so whether it was somebody trying to, to help us through something, it was more of a pride thing. Like I didn’t want to, I didn’t want to have anybody help us. And all, we had a major surgery, uh, in 2011, that was something I really struggled with because it was in Seattle.

So we had to pack up, go across the country, stay for two weeks and we had some, some very. Very gracious and loving people at our church that actually helped provide for that. So we had a family that set us up with a house to stay in while we were there. Um, it happened to me, my hassle Beck’s house. So he used to be the, uh, orthopedic surgeon for the CLC Hawks.

And so he connected us with them when we went over. So we ended up staying in their house overlooking like Washington. Right? You weren’t farming it? No, we were not slumming it, but it was really cool because if they were like normal people and then we also had a family that provided for our flights and our church actually provided money to cover our expenses while we were there.

Um, and that was something I really struggled with just where it’s like, it’s like, I don’t need your help. Like, we’re good. Like we’ve got this, but that was something that I’ve struggled with. And I actually had a, our Bible study leader. He was one on one. He was the one that paid for our flights. Um, and he said, no, you don’t, you don’t get to block a blessing.

What a great lesson I was like. Alright. And so, so I really, I really absorbed that and it started kind of my, my passion to really give back. And so, uh, we had started a special needs ministry at our church for sports. So I started coaching inclusive sports and got him involved in sports. We started playing soccer and baseball.

Then we actually started a Bible study, uh, to support, uh, families that were caring for an individual with special needs. Again, when you look at that, that special needs committee, that was something we really wanted to, I wanted to kind of make sure I meet that gap. I’m not that we are. Good at it by any means, right.

Just trust me. We fail on a regular basis, but being there to, to be a support community really led to some change can’t block a blessing and allowed me to kind of for out in other areas and then kind of feel like, and it made me feel better about it. Cause I was paying that back right now that I needed to.

But, but it was like, you know what? That was something that I really learned. And now that was a huge lesson for me, was accepting, help and not blocking somebody else’s

David Hirsch: place. No, I think a lot of guys struggle with issues like that. Um, cause you don’t want to admit your vulnerability. And I think that life is meant to be experienced in community and the sooner that we can sort of put our ego or our pride aside.

And acknowledge that we do have some needs or weaknesses and the better people we are. You know, if you feel that it’s an obligation to pay it forward or give back, that’s a double blessing. Cause hopefully the blessing is like a ripple effect.

Jon Heckert: Yeah. I mean, we, one of the things that we say about Jackson specifically is we’ll never know this out of attorney, how many lives he’s touched.

David Hirsch: So I’m wondering what, uh, impact Jackson situations had on the rest of your family?

Jon Heckert: It has been challenging after my mom passed away. Obviously my dad and I grew apart a little bit just because we live in different towns and we didn’t come around as much just because my mom wasn’t there when he was real busy.

And then when he remarried. It took a while for that family unit to kinda kind of get back together. I think a lot of it is they don’t barely understand some of the challenges that we have just a normal, everyday they live. Right. So it’s like, it’s very hard for us to go and visit somebody else because it just, it’s not, it’s not Jackson’s environment and it’s harder for him.

So we ended up having to help a lot with that kind of stuff. And we did that for a long period of time, but it just, it got to be a lot. And it was a lot of stress on Jackson, a lot of stress on, on Doris. So that was a challenge. So, so I think that’s probably the biggest negative impact that it’s had. Um, but actually this, even just this year, um, she had put a post out on Facebook, um, just around like understanding our situation.

Um, and this year for Christmas, uh, my dad and my step mom, uh, and one of my stepsisters actually came to the house. Uh, for Christmas, um, I kind of predict everything on our house rather than us having to go there. Um, and so that was something that, that, again, I think, is improving as we move forward. Uh, but that was definitely kind of one the unforeseen things.

It’s just, it’s just a challenge. Anytime you’re dealing with, uh, with an individual with special needs, you have to adjust your. Your thought process of how you do things. I mean, it’s, it’s not, it’s not as simple as just picking up and going. Right. All your accoutrements that come with you, you got equipment,

David Hirsch: there’s more planning guys.

Jon Heckert: Sure. Think about a lot of things. And over time, it’s just like, you know what, that’s just not, you know, when he’s little and you just throw them on your shoulder, it’s not a big deal. But now when you got with chair and you’ve got service dog and you’ve got all these other things, it was like, you know what?

That’s just too much stress on everybody. Um, so, uh, so against that, something that, that has been, uh, definitely been a challenge, but I think we’ve, we’ve found ways to work through them.

David Hirsch: So, um, I’m wondering about supporting organizations that, uh, you and your family have relied on. You already made reference to am CSI.

Are there any other organizations that come to mind that have been instrumental

Jon Heckert: us? Our church has been a huge, has been a huge thing. Um, obviously, uh, that was a big challenge for us to find a church where. He could be fully included and it was accessible and made things a good for him and really added value for him.

Other than that, obviously we’ve gotten involved with Hinckley’s angels. Um, so that’s why I worked for why we’re here today with, with the, uh, with Louisiana marathon. Um, and so, so again, so we, we kind of by happenstance or run into some of these other organizations and really formed, very close bonds. Uh, one of the things that’s very unique about the special needs community.

Is, um, when you find somebody else that is dealing with similar things, you quickly become family. Um, and so, so our special needs family, our AMC OSI family, our ages, angels, family. Um, I’ve got another organization that I work with, um, that does have been fishing trips for individuals with disability. So

David Hirsch: let’s, let’s drill down on a little bit more on Angela’s angels.

And I want to give a shout out to a rooster roster. Who’s one of the cofounders of Ainsley’s angels and Ainsley’s dad. Yes. Um, remarkable organization. The second time, I’ve had a chance to be involved in, uh, for the record. I’m here in Baton Rouge, Louisiana and I pushed Jackson, uh, and they, uh, Louisiana half marathon today.

And, uh, I’m very stiff, uh, but it was a very gratifying experience and he was. Chatting the whole time pointing out to me as we were going, you know, all around Baton Rouge and by, uh, the LS youth stadium, you know, all the places that I needed to know about. So, no,

Jon Heckert: he’s definitely chatted catheter. He talks a lot.

David Hirsch: Yeah. So, um, Ainsley’s angels. Why don’t you share with our listeners what that’s meant to you and your family and what the organization?

Jon Heckert: So, so Ainsley’s angels as an organization that, that, um, fosters diversity and inclusion. By getting individuals that are differently abled and involved in, um, in road races.

So, so obviously 5k is, I don’t know, I can’t even count how many, five Ks we’ve been to in the last four years. Um, it’s quite a few, um, all over the, all over the place, Louisiana and Southwest Louisiana, um, even in the Mississippi. So we’ve, we’ve traveled quite a bit for that. Um, So they really took promote that, that inclusion by getting individuals engaged and that we have angel angel riders and angel pushers, um, or angel runners.

Um, and so the, the theory is, you know, your, your rider is pulling you along the course. Um, and so it’s allowed Jackson to get an environment where, um, he’s able to be competitive and he is incredibly competitive. Um, I don’t know if he was pushing me the whole time  and what you needed once you needed to run

David Hirsch: well, just for the record, because he might listen to the podcast interview.

He told me before the race that his PR for a half marathon was an hour 37 minutes. And I said, well, Jackson, I just want to get something straight. My PR. Without pushing somebody as an hour and 59 minutes. And if I was to come anywhere close to that, that would be another personal PR for me. And we finished in about, we were estimating cause we haven’t seen the results yet.

And two hours and five minutes, which I thought was a victory.

Jon Heckert: No, I mean, especially pushing a hundred pound chair as well as 50 pound kid. Yeah, that’s impressive. So he did a very good job.

David Hirsch: I’d have been disappointed because there were other angels angel. Couples that finished before us. And if he’s super competitive, I’ll just say publicly Jackson, I apologize for not

Jon Heckert: for

David Hirsch: a big able to run faster.

Jon Heckert: No, trust me, you you’re perfectly fine. Uh, he will no longer run with his mother. He says she’s too slow. Um, and her, her thing is I run like a turtle through peanut butter, but I run. Um, so I just make sure that the buggies go straight. That’s what I worry about. I make sure the chairs go straight. Um, so, but it’s a, it’s an amazing organization.

And. It’s really interesting. We, we kind of stumbled across ages, angels through happenstance. So, um, he had an, I run for a runner, um, that he had for about a year, year and a half. Um, and so if you’re not familiar with, I run for it’s basically you’d have, uh, individuals that run and they were running on behalf of somebody that doesn’t necessarily have the capability to do that.

I was such a huge organization. It started with, I run for Michael. Um, and then it’s kind of branched out from there. And again, there’s a lot of runners that, uh, uh, That are a part of that. Um, and so his runner decided to come down and run Louisiana marathon and actually meet him, um, and happened to meet the expo.

Um, and during the expo, uh, they, they were walking around and they went by the gauges angels tent. Um, and saw the chairs. And so immediately they’re like, Oh yeah, you gotta get it. You gotta get into try it. Um, and, um, and then they kind of start going to the store that, Hey, this is, I run for, they just met today and they’re like, Oh, we gotta push him tomorrow.

Um, so she ended, they ended up putting him in a freedom. The next day and she pushed him and his first name. Oh my

David Hirsch: jam. Bam. Bam.

Jon Heckert: Yeah. So we’ve found a lot of those things that are kind of got appointments where everything kinda kind of comes together and that’s, it it’s nothing but divine intervention. So that was, that was four years ago.

So that was the second year that the dead Louisiana microphone, he hasn’t missed one sentence. Um, he, uh, he missed a five K uh, yeah, he did. I think that he did miss a half marathon. Um, two years ago because he got sick, he did the five K and they came back the next day and he was actually sick that morning.

Which is why he will never eat, jump alive again, because, because that’s what came up. Um,

David Hirsch: that must be hard for somebody from

Jon Heckert: Louisiana

so, um, so yeah, so he’s missed one, right? But he’s been, he’s been at each of each of the races, um, the last, the last several years. Um, and from there it was kind of, we jumped in two feet. Um, and so I ended up starting, helping with equipment. Um, my wife actually took over the ambassador show for a period of time.

Um, and so I still help with equipment. Um, so basically I make sure they go straight. Uh, I’m definitely not running. Uh, both my knees would, would not be happy with me if I did. Um, but I have run one, five K lesson.

David Hirsch: What was a very uplifting experience. And just to put it into context for

Jon Heckert: people that were we’re

David Hirsch: here, I believe they said that there were 87 pears, 87 runners, 87 rider angels.

And it was a very uplifting experience. Most of us did the half marathon and a few lucky. Once I did the full marathon, um,

Jon Heckert: which especially with the weather today, it’s a bit silly, but it’s, uh, it’s amazing. It’s an amazing experience. And one of the really cool things, um, when you get engaged with, throughout the ambassadorship and kind of helping help him leave that is you get to see individuals when they have their first experience and the look on the face of a child when they come across and they get that metal for a first time.

Who’s, uh, Sorry, I’m a bit choked up there. Um, is something that, that is really. An awesome experience to be able to see them get that first medal. Um, so that’s something that, that that’s been our really cool experience.

David Hirsch: Yeah. Well, I’m so glad for the introduction and so glad to make her acquaintance. So, uh, you were telling me earlier about, uh, something called hunt of a lifetime.

Yes. And I was in disbelief and I said, could you show me some pictures? And you were like, absolutely. So it’s a real, Oh yeah. I still think it’s way beyond expectations type experience. So

Jon Heckert: it’s definitely a first class

David Hirsch: experience. So a, what is hunt of a lifetime? And what was your experience

Jon Heckert: as an organization that their mission is to provide.

Outdoor experiences to individuals, um, with longterm disabilities, um, oftentimes life threatening and basically, um, what they do is they set up an experience that is literally a hunt of a lifetime. Um, and so it’s fishing, it’s hunting, whichever, whichever outdoor experience, um, you you’d be interested in.

And so we were fortunate enough to be kept at a trip, uh, to go, uh, hot elk. And where was this? So this was in Picacho New Mexico. So we flew into Roswell. Um, which is interesting. So Roswell is a, is a single gate airport, um, down in the Valley that oftentimes feels with fall too. So,

David Hirsch: so what I think about Roswell is UFO.

Jon Heckert: Yes. So we went to the UFO museum while we were there,

David Hirsch: went in Roswell,

Jon Heckert: went in Roswell. Right. So, um, so we went to, we went to the UFO museum. Uh, Jackson was not very interested in that because I don’t understand. Um, but it was, it was a great experience. I mean, it’s literally all inclusive trip. They outfit the Hunter, they, they cover all of the, all of the costs for airfare, whole nine yards.

So they’re an incredible organization. I mean, we actually got connected with them through another hunting organization that I actually work with and partner with as well. So that’s something I do now is I also support a nonprofit that does a similar to what on the lifetime. And what does that come? Uh, that’s four 14 outdoors.

Uh, it’s it’s based on Philippians four 13. I can do all things through Christ who gives me strength. Um, and basically we have a similar mission is to make sure that individuals are able to. I’ll get on the outdoors and have that experience, um, and have it be it be a faith based experience where we can really feed in and, and really, uh, so on into two individuals.

David Hirsch: So most people are still in disbelief based on what you’ve just described that you and Jackson, not just you as a dad went elk hunting. So describe, so people have a vivid understanding about Jackson shooting. I know

Jon Heckert: most definitely. So, uh, so

David Hirsch: he’s 13. He has very little control over his muscle movement with his arms.

Correct.

Jon Heckert: So the device that he uses is made by being adaptive, um, it’s, uh, basically it’s called HQ 100. It is a device that you a firearm or bow or, or whatnot in. Um, and it does the left and right up and down movement via remote control. Ah, so it’s got a little joystick that, that runs the loader’s up, down left.

Right. Um, and then the way we have it set up is we have a video scope that goes on the rifle. And so he sits with a, with an iPhone or a tablet in his lap. Um, and he looks through the scope through the tablet would be a wifi. Um, and then at that point he lines the Ruckel up and he pulls the trigger with a button with

David Hirsch: pointing out the elk, pointing out the out.

Jon Heckert: So, uh, so, uh, we were in a, in a high fence ranch and we had him set up, um, with the, uh, the rifle. Set up a book and I’m kind of like a turret on the back or out of time. Um, and so he’s sitting strapped down in the back in the back of a side by side, in his chair with me holding him and, and what Matt makes sure he’s good.

Um, and so we took the first shot at about 275 yards and right as he got ready to shoot, um, the elk started walking, so Nick, both of the hindquarters. Um, and so obviously we we’ve only got a hit, then they took off and. Started going up a Hill. So I quickly swung this phone, the gun around and, and try to get another shot, but I was probably like 350 yards.

So I shot low at that point, uh, while I’m on the back and then the side by sides bouncing. Um, so we ended up tracking the elk for a day and a half. So that evening was terrible. Cause we had to go in without knowing where the Oak was, uh, lost a blood trail. So it was, it was devastating. So my wife, the next morning was at church and she was talking to one pastor like, Oh, you gotta pray that they find they’re both devastated.

It’s terrible. Um, so that, that evening we were sitting down with the, uh, with the guide at the, at the lodge and whatnot. Cause I heard it. So we would go back out in the morning. And so that kind of pick Jackson spirits, whenever you see we’ll, we’ll get whatever you say is all right. If we don’t find that one, that one’s probably fine.

Like we went back and looked at video. We could tell he wasn’t hit hall, hit bad. Um, which is why we couldn’t wake up, keep tracking. Um, so we actually had to pack in by foot. So, um, packed him in on the back of mile and a half, uh, at 6,500 foot elevation you’re huffing and prog rock, cactus, snow. It was not pretty.

So we were up, uh, up on a Ridge and we saw a group of elk on across the Ridge. At about 500 yards and the last elk that comes down the Hill happens to be the one that we shot the day before. Um, so cause he was still living. Um, so we nicknamed me limpy. Um, and so then I ended up taking, uh, cause we were, we ran, we had to take a shot off of Ridge and probably about a 45 degree angle.

Um, and so there was no way he was gonna be able to be in my lap and take that and take that shot. So, um, I actually ended up taking the final shot at about 350 yards. Um, I dropped him right there. Um, so that was actually the first joint kill that we both had. So both joint harvest. So, um, so we were able, we both got blooded up afterwards where I see the pictures of folks with the lower face.

We both did that afterwards. Just an amazing, amazing experience. And we were able to work with a couple of, couple of guides that, uh, that really, they got a heart for, for individuals with special needs. Um, And it was a, it was an awesome experience.

David Hirsch: And Olympia is

Jon Heckert: hanging at Olympia. Hang on the wall. Yes.

So in your shoulder mounted, uh, so our guestroom has all, has all the animals because. Uh, doors won’t allow them anywhere else.

David Hirsch: I have a room like that in our house. It’s the pool room in the basement. And I can theoretically do anything I want in that room. Yeah. But not in the rest of the house.

Jon Heckert: No, no. So she will not let anything go on and go, right.

David Hirsch: That’s what Doris and Peggy have in common. Yeah. But this is not the only time that Jackson’s been hunting from what I understand most of them.

Jon Heckert: So we were blessed back in 2016, we were connected with, uh, With a local worker, local businesses, the owner that has a piece of property, um, that, uh, that this is one of the things he does.

He doesn’t advertise about an organization or anything. He just, this is something he just does. Um, and so we were, we were able to go out there and he invited Jackson to go to go home. Most people fight now. He didn’t give anything that, that, that first time, but it was a huge experience for me. Um, and frankly, it’s, it’s part of why I got involved in the outdoors, uh, ministry, the experience that I had, being able to do something for the first time.

Um, and I didn’t, I didn’t have growing up. I fished out of town. I didn’t have growing up. Um, so that’s something that we’re both kind of new to, and obviously we’ve had good experiences over, over the last few years. Um, but he was able to, um, to have that experience. And for me, it was a very moving experience.

I literally buried the child. I thought I was going to have out there in the woods. Um, so it, it really hit me very hard when I got out there and it’s like, you know what I can do. Um, it took every single limitation that I ever thought was, would have put it in there. That’s very powerful. So it was, uh, it was, it was a huge, huge experience.

Um, even though, even though he didn’t, he didn’t get to, he didn’t get anything. I mean, he took a shot in the nest, right. I mean, it was, it was one of those things that it’s like, you know, what that experience, and then we’d go on a couple of times back out there and he’s gotten, he’s gotten, he’s gotten a harvest from there.

Um, but, uh, but that experience for me, I think was probably the most life changing experience for me. Was going out and having that and just realize, you know what, there is no limitation, cause no matter how much we appreciate it, I still had the little thought in the back of my mind that, you know, there’s things you just can’t do.

And you know what there’s things that he can’t, but if he wants to we’ll figure it out. Yeah. Um, so, so since then he’s gone, um, he has gotten a white tail. Um, so he’s got a eight point 120 pound field dressed, uh, West to East Texas white tail. Um, he’s gotten a black buck. So summertime antelope. So that’s, those were both metal on the wall.

Then you’ve got the gut as elk. Um, and then recently this year he’s been going duck hunting, but, um, he never really got to, got to shoot. And this year we send him up a shotgun where, where he can do it. So I showed her it and he, he pulls the trigger with a little, little similar device to the other one.

All he just only I’m aiming. He’s not aiming. He’s just sitting there hitting the button. When I tell him to hit the button. Um, and so he actually got his first bird this year, too.

David Hirsch: So it seems like it would be more challenging that

Jon Heckert: sort of Brian will get pounded and be maybe from the law as well. So this first burn, I was L a is BlackBuck yeah, this is his white tail.

So, uh, so now definitely a, uh, a change for us. And again, it’s, it’s something that he really enjoys daylight and that’s something that, that he and I are able to do together. Um, but it’s not something that his mama does. She goes, she’s not interested in it. She doesn’t eat anything wild. Um, so he and I get to get to eat all the, all the meat that comes home.

David Hirsch: That’s awesome. So there’s one other organization I know that has played an important role in your life and it has to do with, uh, how you acquired Bo Bo is a three year old black lab.

Jon Heckert: Yes. So one of the organizations that we worked with Trinity outdoors and four 13 outdoors turning outdoors was the original, the four 13 kind of split off of that.

Um, but while they were still, uh, Trinity outdoors, Bo was gifted to us. So SUPO is a full blooded black lab. Um, he came from a kennel fat. They breed these dogs for obviously field trial dogs, canine service. So obviously military and law enforcement and then obviously service dogs. So that’s kind of the bloodlines of things that they have.

Um, so we were gifted well, um, as, as a puppy, obviously, very, a very good pedigree. Um, incredible animal. Um, I mean, he’s the most intelligent I have I’d ever seen. And we were fortunate enough that with, uh, with my job change, uh, we had some extra funds to, to be able to, to provide training. So we got him trained with a local trainer that basically took him for a little over a year.

Well, I trained him specifically for Jackson’s needs. And since then I haven’t picked up anything off the floor. It was both fixed everything up. Um, I no longer I’m able to leave my shoes anywhere because he will bring them to me.

David Hirsch: Maybe that’s something Doris taught him.

Jon Heckert: He looks at me, he’s like, Dad were you doing alright instead of me and did the coolest trick that he has learned is when you run out of toilet paper, you can give him the empty role and he will go find an adult and bring you back a fall.

So I have never been stranded on a toilet without toilet paper. Since we got both,

David Hirsch: I thought you were going to say it was

Jon Heckert: the banana truck because

David Hirsch: I witnessed the banana.

Jon Heckert: It’s pretty cool too. So, um, Apparently all three of our dogs. So we have Bo who’s our service dog. We have a sky who is our bird dog.

Um, and then we have dash who we loving the car guard dog. She’s a mud, but she’s half a half German shepherd, half lab. Um, so, uh, so yes sir. Oh, apparently it has an affinity for bananas and he assured at affinity with his, with his sisters. Um, so when Bo works, everybody gets bananas. So it’s funny you go to Walmart and they look at me like, I’m crazy.

Cause I walk out with like maybe like two dozen banana. It’s like, no, I’m not raising monkeys. Um, you have this incredible skill at jumping. Um, and so it was trick for a banana as he jumps in. So you can hold that banana tight. Did you want me to jump up and grab it? I’m at least as tall as I am to get, he can, he can jump up and down, touch the banana.

So, uh, so yeah, so we, we make, it can be tricks as well. He’s an incredible animal. He can, you know, the frigerator. So he learned us on his own. He learned our routine in the morning. So when Jackson gets up, I get him dressed. We, uh, we do, we do toilet thing and whatnot. And then he goes in to eat his breakfast.

Well, Bo goes and opens the refrigerator, which we did make his milk up, takes his milk cup to it, brings it to him. Um, and then when Jackson used to watch TV in the morning, he would then go get him the TV or brighten the fever. So I don’t have to get up to get a TV there. I say bow remote, and he gets the kids sit and brings it, um, clothes.

He puts all Jackson’s clothes away. Um, so he’s, he’s absolutely correct. Doris

David Hirsch: was telling me that he opens doors

Jon Heckert: open source and he, he has let himself out of the house a couple of times, um,

David Hirsch: without a doggy door.

Jon Heckert: Um, and he lets his sisters out into other areas of house or opens doors for them on a regular basis.

So, uh, we have a couple of rooms that we will close whenever we leave, just so we don’t want them laying on a bed or whatever, and he will go open the doors and lets us see in and. And whatnot. So, yeah, so he’s a, he’s a little mischievous, so he’s a different dog with a vest on and with the vest off. Okay.

So we say vest off that’s off

David Hirsch: because

Jon Heckert: there’s no telling what he will do.

David Hirsch: That’s amazing. So I’m thinking about advice and I’m wondering if there’s any important takeaways that come to mind that you can suggest for raising a child with special needs.

Jon Heckert: So for me, the biggest piece of advice, I mean, we talked a little bit about it earlier with some of the advice we were given.

There’s nothing that your child can’t do. We don’t say disability. We say disability, it’s just different. Right? Normal is a setting on a Briar, right? It’s not what your life is. So, so we’ve really taken that mentality into our lives. Camp is not a word that we use in our house. They’re the key piece of advice though, would be don’t treat.

Your child any differently than you would in normal child? Obviously they have, yes. They have special supports that they need. And again, Jackson does require a lot of help, but it’s like once there’s time, but we’re not going to be here all the time. Right. So you’ve got to either allow other people to help you, or you got to figure out how to do it yourself.

Um, and again, I think the key thing is instilling the motivation to do more and to do for themselves. And at that point, they’ll figure out a way to do it. I mean, it may not look the same. Right. But it’s, it’s going to be their way and they’ll figure it out. You just have to be there to help support.

That’s fabulous. Not for me. I can’t tell Jackson how to do something because dad didn’t know anything.

David Hirsch: Well, he’s a teenager now.

Jon Heckert: Well, that’s true. Yeah, that makes it worse. So I have a dad that is quote unquote global, but, um, but, but now it’s, it’s let them figure it out, right. Be there to support. Um, but don’t, don’t let them say there’s nothing that they can’t do.

David Hirsch: So why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?

Jon Heckert: So for me, I mean, I was, I was very fortunate that I had a good relationship with the, with my, with my dad. Um, it’s, it’s something that, uh, again, I have him as a son, as a support system if I need it. Um, but for me, it’s to make sure that no child has.

The experience where they don’t have somebody there to help. Right. And no father is in a situation where they don’t have anybody to reach out to, to help support them. Um, and one of the things I’ve been able to do with CSI is, uh, I lead the dad’s group during, during, um, during conference and basically.

Um, I keep, I keep having to extend the schedule that we’re allotted for that because the group keeps drawing and, uh, it’s very hard to get, get men to talk. And once you start getting them open up, they don’t stop. But, but making sure that we’re able, that I’m able to share my experiences and, and help somebody else along the way is something that for me is critical.

David Hirsch: Yeah. Well, we’re thrilled to have you as part of the network. Thank you. Is there anything else you’d like to say before we wrap up, I guess

Jon Heckert: for my, for my clothes, I close a statement. Don’t underestimate yourself, don’t underestimate your, your child, but also don’t underestimate the power of your words. Um, and that’s something that, that sometimes I, I have struggled with.

Um, but making sure that, that your words support your child. Um, and support what their needs are.

David Hirsch: Somebody wants to learn. More about Ainsley’s angels, AMC SSI, hunt of a lifetime for 13 outdoors, or just to contact you, what would be the,

Jon Heckert: um, so, so obviously I can provide my contact information directly, um, but all those organizations were actually out on the internet as well.

Um, and so have a lifetime as is obviously a national organization. Same thing with Angie’s angels. Um, four 13 is more localized in Louisiana area. But, uh, and then AMC OSI is obviously in a national organization. When I would say reach out to those records. Obviously I provide my contact information as well.

Yeah. And I’m, I’m perfectly happy to, to be a resource to anybody that I can correct.

David Hirsch: John, thank you for taking the time in many insights. As a reminder, John is just one of the dads who has 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, the 21st Century Dads Foundation is a 501 c3 nonprofit 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. John, thanks again.

Jon Heckert: I appreciate it.

Tom Couch: And 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 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.

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.

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The dad to dad podcast is produced by Couch Audio for the Special Fathers Network. Thanks for listening.