Our guest this week is Justin DeVault of Algonquin, IL. Justin and his wife, Margaret, have been married for 17 years and are the proud parents of three; Hazel (3), Alice (5) and Henry (13). Hazel was diagnosed with Autism and Henry had a brain stroke shortly after birth, that lead to the loss of his sight and has impaired his neurological development.
We’ll learn about Justin’s journey, which included a sister with special needs and who is legally blind, teaching in a Montessori School, the full range of challenges their children have encountered and a number of organizations that have played an influential role in their lives, including: Dream Riders TLC, Clearbrook Arlington Heights, Duke University Cord Blood Bank and Thumbuddy Special.
It’s a fascinating story and one we’ll hear this week on the Special Fathers Network Dad to Dad Podcast.
LinkedIn – https://www.linkedin.com/in/justin-devault-373043b9/
Email – firstname.lastname@example.org
Dream Riders TLC – https://www.dreamriderstlc.com
Clearbrook Arlington Heights – https://www.clearbrook.org
Thumbuddy Special – https://www.thumbuddyspecial.org
Tom Couch: Special thanks to Horizon Therapeutics for sponsoring today’s Special Fathers Network Dad to Dad Podcast. Working tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at horizontherapeutics.com.
Justin DeVault: Understand that the people around you who want to help are going to want to sprint. You’re in a marathon. So that doesn’t mean don’t work hard, but you’ve got to take care of yourself and understand that you’re in this, potentially, for a long time.
What I mean by take care of yourself is take care of yourself emotionally and physically. Exercise. Eat right. Get sleep when you can. And trust me, I understand it’s hard. We think it’s because of Henry’s blindness, but he does not sleep consistently. I have not had a consistent eight hours’ worth of sleep since he’s been born. Get your sleep when you can. And if you take care of yourself, you’re going to be able to take care of your kids.
Tom Couch: That’s our guest this week, Justin DeVault, who’s the father of three, including a daughter with autism and a son who suffered a brain stroke shortly after birth. We’ll hear the DeVault family story, and how they’ve worked together to help each of their children reach their full potential, on this Special Fathers Network Dad to Dad Podcast. Say hello to 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. It’s a great way for dads to support dads. To find out more, go to 21stcenturydads.org.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad.
Tom Couch: And now let’s listen to this conversation between Justin DeVault and David Hirsch.
David Hirsch: I’m thrilled to be talking today with Justin DeVault of Algonquin, Illinois, who’s the father of three and works at Centas in data analytics. Justin, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Justin DeVault: Absolutely. Good morning.
David Hirsch: You and your wife Margaret have been married for 17 years and are the proud parents of three: Hazel, who’s three, Alice, who’s five, and Henry, 13. Hazel was diagnosed with autism, and Henry had bacterial meningitis, which led to a brain stroke the first month of his life, which led to the loss of his sight, as well as impairing his neurological development.
Let’s start with some background. Where did you grow up? Tell me something about your family.
Justin DeVault: Sure. Thank you. Yeah, I was born in Kansas City, Missouri. And I have fond memories from there, but I only lived there until I was about four before my family moved back here to Illinois, because this is where we were prior to me being born. And we moved to Rolling Meadows, Illinois, for a small amount of time, through maybe I was in second grade. And then we moved to Hanover Park, which is right near Schaumburg. And I lived there all the way through high school graduation, and a little bit of college.
David Hirsch: Excellent. And did you have any siblings when you were growing up?
Justin DeVault: Yes. I have a sister who’s my half sister. Her name is Tara and she’s eight years my senior. When Tara was born, I don’t know if I mentioned this when we originally talked, but she had hydrocephaly, and so she had a shunt that was put in. And she’s doing very well. She went to school. She went to college. She has her own family now. She is legally blind as a result from that.
David Hirsch: Hmm. Well, that’s quite an accomplishment to overcome her blindness, to go on through school, college, marry and have children. So it’s really inspiring whenever I hear a story like that. So she must have had a positive influence on your life as well.
Justin DeVault: She did, yes. I had early exposure to the environment.
David Hirsch: Yeah. Well, thanks for sharing. So I’m sort of curious, what did your dad do for a living?
Justin DeVault: My father had a number of jobs. What I remember primarily growing up was he loved horses. So he actually worked with horses at the Arlington Racetrack in Illinois. He did that a decent amount, but I remember that was more of a part-time thing, from my memories. And after that, he became a paramedic. So he was a paramedic for a very long time, and he transitioned from being a paramedic to working at a local library. And he’s the head building engineer there now, and planning to retire soon.
David Hirsch: Excellent. Well, thanks for sharing. I’m sort of curious to know, how would you characterize your relationship with your dad?
Justin DeVault: My relationship with my father is amazing. I will admit that growing up, we did not always see eye to eye. I was a very stubborn high school teenager, and we didn’t always get along. It was probably around, I would say, maybe when I was 19 years old that we really strengthened our relationship, and we have been extremely close ever since.
We don’t have much time to do it now, but we picked up kayaking, and we love to go kayaking together. And he is over every weekend to spend time with me and the grandchildren, teaching me how to do stuff around the house, because I have no clue what I’m doing. It’s a great relationship.
David Hirsch: Yeah. Well, thanks for sharing and your authenticity about being strong-willed or stubborn when you were a younger guy. It’s pretty common that we think our parents are really foolish, and you go off to college and you come back, and you can’t believe how smart your parents are.
So are there any important takeaways, maybe a lesson or two that you learned from your dad, that you’ve tried to incorporate into your own parenting?
Justin DeVault: Yeah. My father, I would say, has a lot of conviction. I guess that could possibly go one of two directions, but I always agree with his convictions. And he stood by them. I can remember…so my father’s parents divorced and remarried prior to me even being born, I believe. And his mother’s second husband when I was young, he was, well, to put it simply, a racist man, and he enjoyed talking inappropriately around me sometimes.
And my father would never put up with that. He would say, “We are not going to be here if you are going to act like that and talk like that.” And we would go. And that’s just a good example of where he stood his ground on things. He had certain principles that he wanted to uphold.
But aside from that, I also learned a very strong work ethic from my father. He worked at least two jobs throughout my childhood, and always ensured that we weren’t in need of anything.
David Hirsch: Yeah, well, two really important characteristics—having the courage of your convictions, to speak up when things aren’t right, and then the role model of a good work ethic. Because those two things, literally just those two things, will take you a long way in life.
So I’m curious to know what, if any, role your grandfathers have played in your life.
Justin DeVault: Yeah. I remember both of my grandfathers. My dad’s father passed, I want to say in the early 2000s. He was the one who lived in Kansas City that we went to live near. And so I didn’t get to see him often once we moved back to Illinois. But whenever I saw him, he was kind. He had a second place, like a condo, in the Ozarks in Missouri. And I remember traveling there and going fishing and spending time with him, and that was always fun.
I’m very grateful that my mother’s father is still alive. He lives not too far from me. I believe he’s 91 now, and he is still extremely sharp. I think very fondly of my grandfather. I wish I could see him more often, but I would still like to consider us very close. And my mother’s father really instilled in me a passion for learning. He speaks multiple languages, and even to this day, he’s constantly trying to read and teach himself, stay active. I’ll be very lucky if I’m doing what he’s doing at 91.
David Hirsch: Well, thanks for mentioning that. What a blessing it is that one of your grandparents is still alive. That’s the exception, not the rule. And I feel triply blessed, that three of my four grandparents made it into their nineties. Two made it to 91, and the oldest made it to 93. So I didn’t know them just as a little guy growing up, but I got to know them as an adult, like you were just describing with your own grandfather. And it brings back really fond memories. So thanks for sharing.
So my recollection was you went to Roosevelt University, you got a bachelor’s degree in English and language arts, teaching, education. And I’m wondering, when you graduated, where did your career take you? Where did you think you were going to go?
Justin DeVault: Well, I was hoping to be a teacher. I did my student teaching at a high school in Algonquin. And there was a referendum that wasn’t passed, so they couldn’t hire at that moment. And when we’re talking about that work ethic, I worked throughout college, paying my tuition. And one of the jobs I had was delivering for Federal Express. That was a part-time job, and I needed full-time work. I was getting married, I wanted to start a family, and I needed something.
And I had a friend who worked for Cintas, where I currently work, and he said, “Hey, you know, it’s a great company. We need what are called SSR’s who deliver our products and services. It would be an easy transition for you, and I think it would be a great fit.” And so that was back in 2005 that I moved over to Cintas as a driver, and I’ve had various roles since then at the company.
David Hirsch: Excellent. Well, thanks for sharing. And I think I remember seeing something, maybe it was on your LinkedIn profile, that said Six Sigma Master Black Belt, and I wasn’t sure what that was, so you’ll have to explain.
Justin DeVault: Six Sigma is a methodology for process improvement. I will not bore your listeners too much with that, but it is kind of based out of a lot of things that came out of Toyota and Japan. But it has to do with finding inefficiencies in processes, in data, in just things that could be applied to business or anything else, and trying to remove those and make everything more efficient. Essentially.
David Hirsch: Excellent. So what’s the reference to black belt have to do with Six Sigma?
Justin DeVault: There are different belts, so when you start, you can go through a certification process. I believe it starts with yellow and then it moves to green, blue, and then black belt. And the master black belt, at least within Cintas, means that I mentor other Six Sigma belts in their journey.
David Hirsch: Excellent. Well thanks for the clarification. So it has nothing to do with judo and karate.
Justin DeVault: It does not.
David Hirsch: Okay. Thanks. So, I’m sort of curious to know, where did you and Margaret meet?
Justin DeVault: We met in high school, probably around age 16 or 17.
David Hirsch: And did you date throughout and then got married, or how did that transpire?
Justin DeVault: No, no. Margaret had a long-term boyfriend in high school, and I had multiple girlfriends throughout high school. I’m still friends with her long-term boyfriend. He’s a very close friend I’ve known since grade school, and he’s a great guy. I really appreciate his friendship.
But at one point after high school, we were both single. And I can say truthfully, it’s not really something that ever occurred to me. But all of a sudden, it was both being single, it just hit us that we had a lot of similarities, and so we started spending more time together, and the rest is history.
David Hirsch: That’s fabulous. Thanks for sharing. And that’s another thing we have in common. My wife and I met when we were 16 in high school, and we didn’t date straight through, but mostly, and then we got engaged when we were seniors in college. And the rest is history, 38 years later.
So let’s switch gears and talk about special needs, first on a personal level. And I’m sort of curious to know, before Henry’s diagnosis, did you or Margaret have much experience with the special needs community?
Justin DeVault: Well, I had already mentioned my sister, so there was that aspect. Again, I would say she’s not impacted much by her legal blindness, but I still understood, just for lack of better term, differences, right? And so I kind of observed that growing up, and just the need to be kind.
And then one of the jobs that I had in college was working at a Montessori grade school, that actually my middle child Alice attended for a short while. And there was a boy named Reese who attended that school with severe autism. And I was his caretaker while he was at the school, so I had exposure to that during that position.
David Hirsch: Okay. So, just to paraphrase, your sister probably was the most influential, right? Just because it’s such a long-term relationship. And then, when you were in college, you had some experience volunteering, I think is what I heard you say, at the Montessori school.
So what is Henry’s diagnosis, and how did it come about?
Justin DeVault: Yeah, Henry was born seemingly without complication, and around 10 days old, he was very fussy. I remember it was a Sunday, and we called the pediatrician and told him what was going on, that he didn’t really want to eat. And so, you know, he gave us the usual things to try to see if he was constipated, and a couple things, and he still wouldn’t eat. And the pediatrician luckily said, “Why don’t you go ahead and get him to the hospital and just get him checked out?”
So we went to the hospital. And I can remember I went into the room with him, and it was in the emergency room. And they took his temperature, and they said, “His temperature is way too low. He has an infection that we need to get figured out right away.” And so they did a spinal tap, and they came back and said that he had bacterial meningitis.
And we went straight up into the NICU, and spent a month of our lives there. The doctors said it was at that time the worst infection they had seen. And they just straight out told us that they didn’t expect him to make it.
David Hirsch: Oh my gosh.
Justin DeVault: Yeah. So they set us up, you know, that was my first exposure to, and I don’t even know what they call them, but like a long term room. It almost looked like a hotel room that we stayed in. They wanted us as close by as possible. And he was extremely fragile. I just remember him being hooked up to everything, all the monitors, and if we even tried to touch him, his vitals would drop. But the infection was severe enough that he had a full brain stroke from it.
So we found that out while we were in the hospital. There were a lot of things that happened while we were there that I can recall. I’ll just share a couple. One, and I’ve thought a lot about this going back, I remember the doctor telling me, “Your son’s going to make it. He’s going to live, don’t worry.” This was probably a week into the process.
And he left, and the doctor who saw Henry in the ER came up to check on him. And he looked at his chart, and he and the nurse who had seen him in the ER, came up to us and said, “We just really want to say that we’re sorry, that he’s not fighting this infection, and he’s not going to make it.”
And we said, “What are you talking about?’ Well, they had looked at the chart. And we did not know that the doctor who was taking care of him at the time, we found out that he had lied to me, consciously lied to me, to give me strength and hope.
And I watched these two doctors get into it in front of me because of that situation. And I hate to say that I kind of understand why he did what he did, in terms of not telling us exactly what he had written on that chart. I think that if it really came down to it, he would’ve if he thought that it was important to know. But there was something that he decided he needed to give me some strength at that time.
So that always stuck with me. The other thing that really sticks with me, and just to be perfectly candid, religion is not something that is necessarily in my life. And there was a point at which he wasn’t producing urine. He would not pee at all. I can’t remember exactly where we were in this journey, but he was too small for the dialysis machines they had there.
And so he was going to get flown by a helicopter to the children’s hospital in downtown Chicago. It was during a blizzard. The helicopter was already on its way to pick him up. I was going to fly in the helicopter, and Margaret was going to be in an ambulance, I believe, driving there.
But the doctors said to us, “Here’s the situation. He’s not going to make the flight. But we have to try, because he is not going to make it here either. This is what we got to do.” And while the helicopter was on the roof, and we were getting ready, he just started producing urine out of nowhere. And the doctor said—I remember his word specifically—he said, “I can’t explain it. It’s a miracle.”
David Hirsch: It gives me chills just to think about the story you just recalled. And I’m getting the sense that Henry is sort of a miracle baby. Not a baby anymore, but he was a miracle baby. Now he is a miracle young boy.
Justin DeVault: Yeah. So with those little digressions out of the way, because of the full brain stroke, he lost his sight. He has cortical vision impairment completely, and then he also has adrenal deficiencies. He has something called diabetes insipidus, which is not your standard form of diabetes, but it’s the body’s inability to really regulate its sodium. And I would say cognitively he performs, or he is at like a three and a half, four year old level at the moment.
David Hirsch: Well, it sounds like a lot to put in perspective. And I’m sort of curious to know, going back to what was going on that first month or so, what was your first reaction? What were you and Margaret thinking about at that point?
Justin DeVault: I didn’t know that I was going to react in this way. Margaret reacted how I would expect anyone to, which is distraught and emotional, but very loving and supportive. I had some type of odd calm come over me, and I just leaned in and said, “I need to be a strong partner to my wife and father to my son who’s going through this right now.”
And I wasn’t hoping for something that I didn’t know was going to be happening or was definitely going to happen, which he was going to make it through, but I saw no benefit in me being anything other than positive. And so I was throughout the full month.
David Hirsch: That’s pretty remarkable.
Justin DeVault: And I remember that people, even after that, said I must be suppressing emotions, because I did not show any, and those emotions never came out in that way. And I don’t think that I did that. I think somehow I was able to figure it out when I needed to.
David Hirsch: Yeah. Well, that is really remarkable. Everybody has a different experience. And, you know, you don’t want to be judgmental if people are emotional or distraught or whatever their reaction is, because we each interpret situations differently.
And I think there’s some grace that goes on between a husband and a wife or mother and father. We all process things at a different level, and over a different period of time for that matter. So, thanks for your transparency. What were the fears that you had that first six months, that first year or so?
Justin DeVault: My fears were just the same as they are right now, but slightly different. And that’s just the unknown. Not having any idea of whether he was eventually going to see, what complications he was going to have that did not start yet.
You know, when he first was diagnosed with meningitis, and he had lost his sight, they had him on phenobarbital for a short amount of time, because they were concerned that he was going to be seizure prone. And so we didn’t know if we were going to have to deal with seizures. Luckily he’s not.
One thing that we’re very fortunate for is that his hearing was not affected. It is very typical with meningitis that children lose their hearing. So we didn’t know if he was going to be deaf and blind. We were waiting to hear from that. But just not knowing how to navigate the situation.
And then also fear, quite frankly, for my wife too. She was very depressed for a long time. And feeling helpless, wanting to take that pain away from her, and not being able to. She had to figure that out herself.
David Hirsch: Yeah. Well, it sounds like you’ve come a long way since then, which has got to provide at least some sense of relief in putting it all in perspective. Was there some meaningful advice that you got early on that helped you or Margaret sort of chart the path that you’ve been on?
Justin DeVault: I would say it was all around logistics rather than emotion. Margaret and I explored speaking with counselors quite often, or quite a bit when we started. And I’ll be honest, I don’t know how much we got from that process. That doesn’t mean it’s not beneficial for others, but I think that we understood our emotions and didn’t have to navigate those.
But it was the logistics around getting all the services we possibly could for Henry. And so we got a lot of good advice around how to contact people with early intervention, get Henry on PUNS, seeking services. Those types of things were very beneficial for us.
David Hirsch: Yeah, well that’s very fortunate, because it can be a little bit overwhelming to say the least. When you look back on the circumstances, were there some important decisions that you and Margaret made?
Justin DeVault: Sure. You know, we made decisions that were pretty hard in certain circumstances. Probably around age between two and three, I don’t know how we got in touch with this outfit, but we were approached by a hospital in China who wanted Henry to have experimental stem cell treatment, to treat the symptoms of the [?]. And we met with people a couple times here in the states, and the cost was quite high.
But we knew that between our immediate and extended family and friends, that we would’ve come up with the money to do that. And obviously there’s a lot of emotion tied behind that, because you want to do whatever you can for your child. At that point in time, that long ago, when we weighed the risk, we decided that it just wasn’t worth it. And so we made the decision not to go through with it.
David Hirsch: Wow. That must have been a pretty heavy period of time, going back and forth, pros and cons and trying to evaluate what’s the best path. Was there some treatment that you were able to pursue beyond that opportunity to go to China?
Justin DeVault: For Henry, no. We have just really pushed getting as many services as we can for him. There is also a wonderful place out near us called MCCD, which is the Midwest Center for Child Development, I believe is what it stands for. It also has a name, Dream Riders, and it’s a place where you could do horse therapy along with other therapies.
And Henry’s been going there since he was three years old. So he’s been riding horses and getting speech, physical and occupational mobility therapy there, on top of the therapies that he gets in public school.
David Hirsch: Excellent. So has there been a turning point when you look back that said, “This was hard, and then it got easier,” or, “We’ve been on a more even keel”?
Justin DeVault: Things are, I would say, even keel. I’m very happy. The family is very happy. Henry is a happy, happy child. What I’m thankful for is that I know he knows he is loved, and there are children without special circumstances, unfortunately, who don’t even know that. And so I take stock in that.
But when it comes to fears and emotions, one thing that I struggle with as an individual and a father is the fear of the unknown with the future, right? I know that I’m not going to be around forever. I can do things to help, but I know that I cannot guarantee that his quality of life will necessarily be the same once I’m gone. I’m just trying to navigate that, trying to figure out how I can ensure that happens as much as possible. Those are the things that I worry about these days.
David Hirsch: Well, thanks for sharing. Again, I appreciate your transparency and authenticity about that. So I’m sort of curious to know what impact Henry’s situations had on his siblings, if any, your marriage, or the extended family for that matter.
Justin DeVault: Yeah, the extended family has really been there, as well as friends. I consider our group of friends, extended family. We’ve had the benefit of…my best friends that I still have today, I’ve known since second or third grade. And so I consider them just as much as family. But it’s been so great to have all of their friendships for support and all of their help.
I love the company I work for. But one thing that’s been very difficult is they’ve asked me several times for promotions, but it would require relocating, and I’ve had to make the decision to not do that, because we have my mother and father, Margaret’s mother, her sister, all within 30 minutes of here. And they’re all extremely helpful—and we need that support. So we are staying where we are for now.
David Hirsch: Yeah. Well, it’s definitely potentially had an impact on your career, you know, as far as your advancement. But it sounds like the stability that you get by the support network that’s evolved around your situation is more valuable.
Justin DeVault: Oh yeah. And to be fair, the company has been extremely supportive, and it’s a great company, so I don’t want to discount that.
David Hirsch: Well, it sounds like a win-win situation.
Justin DeVault: And then you also asked about the rest of the family. Alice, our middle child, she is very understanding, without, I think, fully understanding the situation. And then also you had mentioned that our youngest, Hazel, has autism. I don’t know that I necessarily have a reference point. I would consider it more on the extreme side to be completely frank.
Of course, when she got that diagnosis, at least in my head, I can speak for myself, I was thinking, “This is happening again. We’re going to go through this again.” I don’t think fairness at the end of the day plays into that though. And the reality is, because of our experience with Henry, we knew exactly how to hit the ground running to get her exactly what she needed. And so Henry’s situation helped us in that regard.
David Hirsch: Yeah. Well, thank you for mentioning the impact that the situation’s had on your middle child, Alice, and then your daughter, Hazel, who’s more recently diagnosed with autism. And she’s such a young girl, right? She’s only three. You know, there’s still a lot of unknowns.
But to the point you can intervene and get all the services that are available today, better than it was five years ago, or a decade ago or more, hopefully that will enhance the trajectory of her experience. It seems like you and Margaret have your hands full. To say the least.
Justin DeVault: Yeah. We don’t help ourselves by also having two dogs, so the house gets a little chaotic, but that’s okay.
David Hirsch: Well it sounds like you must thrive on pandemonium or something like that.
Justin DeVault: Go so fast you can’t stop to take a look at everything, I guess.
David Hirsch: So I’m thinking of supporting organizations. You made reference to one, the Dream Riders, and I’m wondering if there’s been any other organizations that have played an important role, either on Henry’s behalf, Hazel’s behalf, or just for the family overall.
Justin DeVault: Sure. Well, of course, you know, because Henry is on PUNS, we have local organizations like Clearbrook and Service, Inc., who help us with his PSW, I believe is appropriate acronym. So we just call her our nanny, who who stays with him, and she is absolutely amazing. So we get a lot of services through them. Henry is still in diapers, so we get all the diapering. That’s because they helped us get on PUNS, and so therefore he’s on Medicaid.
Then there is an organization named Thumbuddy Special. So think about the word somebody, but replace “some” with the thumb on your hand, Thumbuddy Special. And I don’t even remember how I stumbled upon them when I did. But what they like to do is provide equipment for those in need.
And so when I first hooked up with them, they have donors who want to provide things for children in need. I got an adaptive bike, so it’s very large. It’s more like a tricycle. I can sit on the back and steer and pedal, and Henry can sit on the front of that bike. And so that was the first time I worked with them.
And then two years ago, we gave Thumbuddy Special our used Dodge Caravan, because Henry was having difficulty getting into it, and they found for us down in Texas a Ford E-Series Econovan in fantastic shape that already had a lift in it for a transport chair. And so we got that from them.
It’s an amazing condition and it’s really helped us, because before I kind of had to lift Henry into the van. Henry is over 120 pounds now, and that was just not doable for Margaret. And now we have a vehicle where he can just go in his transport chair, go up on the lift and just roll right in. It’s absolutely fantastic.
David Hirsch: Yeah. What a blessing it is to have organizations like Thumbuddy Special that is able to lean in and help with these bigger purchases, the equipment that a family might need, like you were just describing. So we’ll definitely be able to include some information about Thumbuddy Special in our show notes. Any other organizations?
Justin DeVault: Yeah, the other one that comes to mind is Duke University. When Alice, our middle child was born, we harvested her cord blood, which has stem cells in it, just in case we could use that for any reason. And you know, they store that for you for a fee, not Duke University, but a company that that does that.
And when we received Hazel’s diagnosis, we started making some phone calls and we found out that Duke University has a clinical trial for treating the symptoms of autism with stem cells. And that was probably about a year in the making.
But just two weeks ago, Margaret went with her mother and Hazel and flew down to Duke University for the procedure, for the stem cell treatment. They’re back, and it went well. We don’t know if there are going to be any results from that, but they have had positive reports from families. These are more qualitative than quantitative, but still we’re hopeful. So I would say that that was very exciting to be able to do.
David Hirsch: Yeah. Well, that’s amazing. Thank you for sharing. And it would be interesting perhaps, some years down the road, Justin, to circle back and maybe reflect on what’s transpired as a result of that. I put that under the banner of the wonders of medical science. So kudos to Duke University and some of the sort of groundbreaking research that they’re involved with. Any other organizations?
Justin DeVault: I feel horrible, because I’m sure that there are some that I’m just forgetting at the moment.
David Hirsch: Okay, well if it comes to mind, we’ll include it. So I’m thinking about advice, and I’m wondering, what advice can you share, given the fact that you’ve been on this journey for 13 years, and you have two data points, two children that have identified special needs? What advice can you give to a younger dad who might be closer to the beginning of his journey?
Justin DeVault: A couple things. One, understand that the people around you who want to help are going to want to sprint, and you’re in a marathon. So that doesn’t mean don’t work hard, but you’ve got to take care of yourself and understand that you’re in this potentially for a long time.
What I mean by take care of yourself is take care of yourself emotionally and physically. Exercise. Eat right. Get sleep when you can. And trust me, I understand it’s hard. We think it’s because of Henry’s blindness, but he does not sleep consistently. I have not had a consistent eight hours worth of sleep since he’s been born.
David Hirsch: Oh, my gosh.
Justin DeVault: Yeah. So get your sleep when you can, and if you take care of yourself, you’re going to be able to take care of your kids. It doesn’t have to be a full-time job, but constantly look for ways that you can take care of your children with needs. Margaret and I were lucky. We both have very successful careers. We make good money. That has never stopped me from looking for opportunities to get things for our children outside of our incomes, because I want the most for all three of them, but Henry and Hazel.
So find out organizations out there who want to help. There are people out there with money who want to give it to those in need, and they just don’t know how. So just here and there. Constantly do some research.
David Hirsch: Yeah, great advice. I think the importance of taking care of yourself is critical. Sometimes we all get caught up with what’s going on in life, whether it be at work or at home, and it’s really easy to not take care of yourself, whether it’s, like you said, eating right, sleeping right, exercising.
And you know, if you’re not bringing your A game, particularly when there’s some challenging situations, you’re not going to be able to do everything you’d like to do for your spouse or for your children. And it’s important to have that balance. So thanks for emphasizing that.
So I’m sort of curious to know, why is it you’ve agreed to be a mentor father as part of the Special Fathers Network?
Justin DeVault: I feel that I get enjoyment out of helping others. I do that outside of this situation. Whether it’s at work, I love being a mentor. I love helping my friends and those in need, and there are those who helped me. I know that I’m going to ask for help still from others, so I’m joining the organization selfishly as well. But I know that I’m going to get personal satisfaction out of trying to help others who are experiencing this for the first time.
Justin DeVault: Yeah. Well, we’re thrilled to have you, and you raise a good point. You’ve got a dozen plus years of experience yourself, but in reality, while you might be able to be of assistance to one of those new dads who’s been at it for just a year or a couple, three years, you still have a path that’s uncharted, right? Another dozen plus years until Henry ages out of the services, to age 22, and then beyond. So I’m hoping that you’ll be able to connect with some of the other dads in the network and learn from them as well. I know that mentoring is always a two way street. You think you’re doing something to help somebody else, but in reality, you know it’s helping yourself as well.
So anyway, thank you for being involved. Let’s give a special shout out to our mutual friend, Dr. Rob Kippro [?], for helping connect us.
Justin DeVault: Yes, thank you.
Justin DeVault: Is there anything else you’d like to say before we wrap up?
Justin DeVault: Yeah. You know, when you’re talking about any other pieces of advice, I’m not sure how I failed to mention this, but it’s only 10 minutes a day. I practice mindfulness meditation. I’m not saying that everybody out there should go out and do this. But if there’s one thing that I want to stress is, try to be in the present moment as much as you can with your children and your family.
When we’re in situations like this or not, we’re often always thinking about what has happened or what is going to happen in the future. And I mentioned that I have fears of the future. But if nothing’s going on right now but positive with your children, live in the moment, and recognize the joy that you have right now.
And if it’s a hard time with your child in need, and they’re having a hard moment, you need to be in the present moment to be there for them. So always just try to be in the present moment with your children.
David Hirsch: Yeah. Well that is a very profound statement, and the thought that comes to mind is that some people dwell on the past and you can’t change the past. It’s not bad to reflect on things that have happened, but you don’t want to spend too much time there. And at other times we worry about the future, because of all the uncertainty. It’s a typical reaction, right? It’s not just because of a child with special needs.
And if you spend too much time worrying, you’re robbing yourself of being present, like you were saying. And whether it’s a stable situation or maybe a less stable situation, you need to be present. And it’s easy to talk about these things, but I think it takes an extra discipline to actually practice that. So thanks for the point.
So if somebody wants to contact you, I’m wondering, what’s the best way to do that?
Justin DeVault: Well for this purpose, I would say if you could work as an intermediary between us. I am on LinkedIn, so if someone wanted to message me on LinkedIn, they’re happy to do so as well.
David Hirsch: Excellent. Well, we’ll be sure to include your LinkedIn profile, in the show notes as well. Justin, thank you for taking the time and many insights. As reminder, Justin, 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 father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stcenturydads.org.
Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501(c)3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax deductible contribution? I would really appreciate your support.
Justin, thanks again.
Justin DeVault: Thank you.
Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. 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 match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad. Lastly, we’re always looking to share interesting stories. If you’d like to share your story, or know of a compelling story, please send an email to David@21stcenturydads.org.
Tom Couch: To find out more about the Special Fathers Network, go to 21stcenturydads.org. This program was produced by me, Tom Couch. Thanks again to Horizon Therapeutics, who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at horizontherapeutics.com.