103 – HopeAnew.com Co-Founder Jonathan McGuire Talks About Raising A Son With Autism & Advocating For Other Families

Transcript:

Dad to Dad 103 – HopeAnew.com Co-Founder Jonathan McGuire Talks About Raising A Son With Autism & Advocating For Other Families

Jonathan McGuire: This journey is hard. I’m not going to ignore that. And I don’t want to downplay that for our dads out there who are trying to learn now, how do I be a husband? How do you be a father they’re in this thing that life has not prepared me for. We can become so inundated by them hard that we can’t see the forest through the trees. There comes a point in the journey and how our members not might not be there. But at some point, you’ll be able to look back and say that there is beauty in this.

Tom Couch: That’s Jonathan Maguire, David Hirsch’s guest on this Special Fathers  Network dad to dad podcast. John is co founder of HopeAnew and hopeanew.com.

A laugh together, cry together, pray together community that helps parents of kids with special needs navigate their path to the future. That’s all on this Special Fathers  Network , dad to dad podcast. Here’s our host David Hirsch.

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

Tom Couch: 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 death.

Tom Couch: So let’s listen in on this conversation between Jonathan McGuire and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Jonathan McGuire of Fort Wayne, Indiana. Who’s the father of two and cofounder of hope, a new, a Christ centered group that gets it for parents who are raising kids with special needs. Jonathan, thank you for taking the time to do a podcast interview for the Special Fathers  Network .

Jonathan McGuire: Yeah, it’s so great to be here. I’m looking forward to the time together and, uh, yeah. Excited. Thanks for having me on it.

David Hirsch: You and your wife, Sarah have been married for 19 years and other proud parents of two boys, Josiah 15 and Jordan 13 who experienced extreme food allergies. And who also was diagnosed with autism.

Let’s start with some background. Tell me something about where you grew up.

Jonathan McGuire: Yeah, so I grew up in a small Northern town in Northern Indiana. That’s where I was born, but the first five years of my life, my dad was a pastor in Southern Illinois and we lived down there. And I moved back up here when I was five.

So we lived in a small town called share bus, go famous for turtle races in the summertime and a turtle day parade and all kinds of great things. My dad sold insurance for Allstate when I all grown up and I grew up in an active church here where I went to use group had all kinds of visions and dreams where God was going to take me in life grown up.

I thought I was going to be a missionary pilot. At ages, 14 years old, I took flying lessons and loved flying and, uh, had the goal of going onto moody Bible Institute in Chicago, where I would get my degree in missionary aviation. So I graduated from high school, went on different missions trips. I went to moody Bible Institute where I had this huge refocus where God just sorta shook up my world and, uh, Gave me some posture to reflect on what he was doing with my life.

So he changed gears and actually, instead of going to missionary, aviation went onto grace, theological seminary in Wynonna Lake, uh, Indiana, where I obtained my masters in counseling and during, or just before that time is where I met my wife, Sarah. Excellent.

David Hirsch: Well, let’s go back a little bit. You mentioned that your dad was a church planter and he also worked for Allstate.

So that was during your formative years when you were a young guy. And when I remember you’re the youngest of four,

Jonathan McGuire: that’s correct? Yes. I have two sisters and a brother. So I’m wondering,

David Hirsch: how would you characterize your relationship with your dad?

Jonathan McGuire: Hmm. Yeah, that’s a very special relationship. He’s always been, there has been constant in my life.

He’s a hard worker. So when he’d be working all day to provide for the family, but then I’d often, often see him studying late hours into the night, studying God’s word and, uh, getting ready for Sundays and how to, uh, how to teach God’s word to those that are at our church. And so I’ve never. Just seeing them diligently applying God’s word is studying it and seeing how we can apply it to our lives and helping us, helping us then apply it to our lives.

Our times together, we’d go out Saturday mornings and go out on a fishing boat and just sit there and just spend time together. Not, not often real deep conversations, but he was there. He noticed that relationship building that Constance and that knowing that he was there and we could talk. And that, that relationship has continued even now, nowadays, too.

He’s still alive and, uh, he’s retired now and we’ve, we’ve seen him go on and do different mission work early in retirement. And now he’s back still very active involved with what their local church, but a hitter they’re still there and constant. And I can, I know these he’s a person I can always go to for advice and insight and yeah.

As, as, as good as a great relationship.

David Hirsch: Well, I’m pleased to hear that you didn’t use the word present, but that’s what I heard. You know, he’s been present in your life and, uh, you know, you don’t want to just take that for granted because there’s way too many kids, young adults for that matter, growing up that don’t have both their parents involved for a lot of different reasons.

Are there any important takeaways in addition to the ones that you’ve mentioned about his good work ethic, being a godly man, um, you know, setting a good example. Uh, anything that comes to mind when you think about lessons that you learned from your dad?

Jonathan McGuire: Yeah. He’s always been focused on what it is that he can do to bring glory to God.

So early on, before I was born, he had a insurance business doing well and they felt God, he and my mom felt God calling them to ministry to do this church plant. And so he sold the business, went on to Bible college and gave up house, home everything and took his wife and three kids off to West Virginia where they, where he studied Bible and then went on to do this church plant.

So seeing just his example of stepping out in faith and trusting God to provide and, uh, be willing to give up the comfort zone to do what he felt like it was that God wanted him to do. And so that’s been a huge impact in my life

David Hirsch: role model. Thank you for sharing. Well, from a career standpoint, what I remember is that you worked for Wyclef for quite a few years in different roles there, and you received a certification in the Steven’s leadership training and trauma and healing, which led to running a trauma.

Healing workshop and of all places in the world, South Sudan, I don’t know anybody else that’s been to Sudan, let alone South Sudan. So what’s the backstory. And what was that experience all about Jonathan?

Jonathan McGuire: Yeah. Um, I remember as we were working with Wycliffe hearing, just the stories of these nationals who are living in these war torn areas and other areas, even where.

There’s been the struggles ethnically. And so I connected with a group that had developed this trauma healing curriculum, and it was developed in response to the Rwandan genocide. And they looked at key questions that they found the survivors of the genocide were asking, no, like, why God, how can you be a good gun laws to happen?

A grief? What’s that process look like lament. You know, heart wounds, bringing our pain to the cross. And how, how do we plan for a future when we’re living in crisis? And they developed this whole study where they took God’s word and applied it and help them stay God’s word to find the answers to these struggles and these questions.

And I like, wow, that, that is something I want to be a part of. And so in 2010, I started, uh, giving the training for it. And went through their, all their processes. But the opportunity came about for me to go to South Sudan. And this is in 2012 and to South Sudan was only about a year old at this point.

And I was, had the opportunity to go work in this refugee camp, right on the border of South Sudan and Sudan. We were about a kilometer away from the border. And refugees were flooding into the camp by the thousands, every day as their own country was, was bombing their villages and killing their families.

And in fact, at one point there was tanks attacking eight kilometers from where I was at. And as I was there, I couldn’t help. But notice that I was actually. Considered to be an elder there. And if, if you, if you, if you don’t see a picture of me, I’m not all that old at that time, I was in my thirties. And, um, not by age, no, not by age, but what, what was happening is the families were sending the young people from their families onto the refugee camp so that they would know that there’d be future generations surviving from their family.

And so. We we worked with, with a group of about 20, uh, 20 nationals. I think there’s NWA actually about 22 and they represented 10 language groups. And one of the language scripts actually had never even been discovered before. So that’s, that’s pretty neat as he looks through the books of the Ethnologue Ethnologue is this big book that lists all the languages in the world and this particular language group.

Was not in that book. So that was pretty, uh, neat to be a part of. But I had it opportunity to work with these young individuals who are leaders in their community leaders, in their families, and help them work through these questions of why God, how can be a good guideline as to happen. And it was such an opportunity to get to work alongside them.

One of my favorite memories being there is every night and I was actually staying in a tent camp with Samaritan’s purse there. And every night as I go to bed, you’d have this, just the smell of a smoke over Pat, almost overpowering. You, you would hear the sounds of music and people dancing and drums beating off in the distance.

And this was such, such a neat thing for me, because as a daytime, each day, we led, we led a workshop working with, with, uh, about 22 of the leaders there in the community. And during the daytime, it wasn’t uncommon to see some of the participants sitting there sort of almost flat affect, you know, the expressionless and even some of the women you’ll see, just sort of turned away a little bit as a wrap themselves in our Shaws and they could tell the pain was just so great as they’re working through the motions that they couldn’t quite dive into that.

And then. As they got home at night, then having that support of the community where they’re able to let go open up the Shaw’s, let down the Shaws and dance with their other brothers and sisters in that community. It was just such an incredible moment to hear the voices and the drum beats rising from around the village or around the refugee camp.

I should say,

David Hirsch: if I understand what you’re saying is that a. They’re displaced from their community, right. They’re refugees. And there is this joy, right. That they were experiencing or sort of a. I don’t know if it would be lightheartedness, but it was one of their ways of dealing with the reality, the harsh reality of being displaced from their, their country.

Jonathan McGuire: Exactly. Yeah. As we worked with the group, we were there for a series of weeks as we were working with them and we were working through questions of like the questions of why God, how can be a good God, allow them to allow these things to happen to our family, to our village, to our people. God, I’m angry at our government.

I’m angry at the people that did this. How do I forgive them? Or will you forgive me after I’ve done this to other people? You know, how do we grieve? Is it okay to grieve? What’s that look like

David Hirsch: pretty powerful stuff at a pretty young age? You know, speaking of which, if my math is correct, your boys would have been something like seven and five years old.

Jonathan McGuire: Exactly. Now is

David Hirsch: this just you being on a mission or was it you and Sarah or the four of you?

Jonathan McGuire: I flew to Kenya, just myself and Sarah stayed home with the boys while I was gone. And that was heavy stuff. I didn’t, I mean, there was the reality of your dad might not come back from this trip, you know, and my boys, even for months afterwards, they would be praying God, please help the bombing to stop in South Sudan.

And to help the bombing stop on the border here, please protect these. And yeah, you know, this was a little heavier than the average prayer requests or the average prayer item of, uh, of, of children their age. You know, it wasn’t my hamster. Uh huh. Got it this week. Um, but it was God, please stop the bombing.

That’s happening here. And so it was just neat to see how God used it in their lives to have a compassion for those who were experiencing injustice and who are struggling and suffering. But it was also extremely hard to leave my family for that period. I don’t want to want to downplay that I was ready to be back in their arms and vice versa.

They were ready to have me back. So it was important. Um, but yeah, it was still very hard.

David Hirsch: How long were you actually gone?

Jonathan McGuire: I was gone for total time. I believe was about four weeks.

David Hirsch: Yeah, it sounds, um, like a surreal experience, like you’d said, any other missionary work that you are, you and Sarah have done

Jonathan McGuire: personally, part of the process of connecting, trying to figure out what God’s direction in my life was in high school.

I actually went to Thailand for a couple months, helped fill the drug rehab center and in. College. I had the opportunity to work, get nine weeks and Papa new Guinea, where I work alongside the missionary pilots and work alongside the mechanics there. That’s when God brought it, made it reality. F okay.

Missionary aviation is not what I have for you while it’s a great ministry. This is not what, where I’m directing you. I, the opportunity to fly into villages or fly with a pilot, who’s flying into villages where it would be a 15 minute flight. But you would fly in. You’d be going around all these mountains.

He’d come into runway at the end of the runway where you’re landing at would be a cliff. And then as you touched down, you’d be going up the side of the mountain and then you park the plane on the flat spot, on the mountain, on the top. And then when you ended up, you took off, got going and you were hoping you’re going fast enough before he got to the cliff at the end of the runway.

So the men they’re are doing incredible things and God was using it in amazing ways. But I also knew that wasn’t where he was leading me. And to use that, to help refocus me into more of the counseling type training.

David Hirsch: Wow. It sounds like you’ve had a lifetime of experiences with just the few that you’ve described and, uh, you know, I think it helps put things in perspective.

Whenever you have a chance to travel internationally, you don’t necessarily have to do mission work, but, uh, you know, you don’t take. Things for granted as much, you know, when you see how other people live and some idea that there’s some, 2 billion people in the planet of the 7 billion of us that are living on a few dollars a day.

And, uh, you know, it sounds like you’ve had some eyewitness to some of what that’s all about at, at a relatively young age too.

Jonathan McGuire: Yeah. It was a great opportunity. And. I know it’s a privilege that not a lot of people have, but if you, if you do have, I’d encourage you to take it.

David Hirsch: I’d like to switch gears and talk about special needs first on a personal level, and then beyond. So before Jordan was diagnosed, uh, did you or Sarah have any experience in the special needs community?

Jonathan McGuire: You know, it’s funny how your perspective changes. So before Jordan, I was diagnosed, I didn’t realize I was having special needs experience.

It’s hard to explain that, but I grew up in a family where, as I mentioned, I have two sisters and one brother love them. They’re all. They’re wonderful. But with that, my one thing I haven’t mentioned or shared is that my, my brother, he actually he’s bipolar. And so at the time I just thought that was. It was just life.

I didn’t realize that it never occurred to me. Oh, this is a special need. This is different. Yeah. It’s not, it’s, it’s something that we’ve all learnt how he functions and how to be a family, family, and the work together with that. And then going on. As I was getting my training. After I, after I got my masters in counseling, I had an opportunity to work as a Homebase therapist.

So I was going into homes with families that had different needs, different diagnoses. And again, even though I saw all these different diagnoses, I didn’t, it didn’t register. Oh, these are special needs. Now, as I’ve, as I met a dad, as, as I have my own son, that’s when my, uh, I guess I should say the blindfold was taken off and I realized, Oh yeah.

Okay. That’s yeah. And that’s, and that’s when I started to have more of a heart, more of a passion and starting to see the realities of what that means to have a disability, what it means to have special needs. And

David Hirsch: that’s all. Yeah. Well, thank you for sharing. Um, I’m sort of curious to know what was the diagnosis at, what age and what was your sort of first reaction?

Jonathan McGuire: It started soon after birth when Jordan was born, he’s our second born, we were fairly new to the mission field and our youngest son, he was born here in Indiana, Fort Wayne. And we went up to Sarah’s parents in grand Rapids, Michigan for a while to stay with them. As, as we were transitioning to move down to Texas full time for our mission assignment there.

And soon after we, he was born, we started realizing. He’s he’s crying an awful lot and he seems to be in pain. What’s going on and through different conversations, Sarah was, was challenged. Hey, maybe he’s maybe he’s allergic to milk. Like really? Is that, is that really a thing? How common is that? You know, so we took out milk and then sure enough he’s he stopped crying and he started being able to sleep well.

When you’re not familiar with a diet like this, if you take out milk, what’s the next thing that you a substitute it with all of a substitute soy. So let’s do soy milk and all these other things. And he soon began to react to that. And so the list kept going on as you he’d have a day where he would do well, then the next day he would start being in pain, crying all hours of the night, and I’m just really struggling.

And to finally, we are able to get it done to, to a point when he was still nursing, that Sarah was able to eliminate all these different foods and the list was really long and he was able to, to do well. And so like, Oh great. This, this is perfect. Well then came the point of, you know, what he can’t nurse forever, you know, it’s, it’s just sort of found upon me to be in middle school and still nursing.

So, how do we wean them? How does he eat? And again, as we try to re or introduce solid foods to him, he reacts, I acted to everything. And so, so he could eat at once, but then the second time he’d react to it. And this happened on and on and on again. And to the point where we found out the only thing I thing he did not react to what sweet potato.

So he could eat any form of sweet potato. And we, so we, we became experts on cooking sweet potato for them, but then it came to the point where he used to be developing, you know, and talking and everything. And we realized he’s he’s nonverbal, you know, and his assets he’s, he’s not, he’s not reacting and interacting with his, with his brother the way that he should be, you know, his brother would take a toy from him and he’d just shut down.

There wasn’t the screaming there wasn’t, there are things that would happen that, and typical, uh, siblings interact like that, you know, you take my tractor and that was that. He was, he was, he was, he just stare and yeah, you just see him sort of collapsed within himself,

David Hirsch: out of curiosity. How long was he nonverbal?

Jonathan McGuire: Um, he really, it was about three that this started the turnaround. And at that age, we. We were in a place where we able to get help from different experts. We did some other things that helped nutrition-wise and other, not just nutrition, but many other things that help. And we started to see that turnaround.

And I remember we were actually driving to Florida when we really saw this change. We were, were, we’re going to spend time. I’m sorry, not Florida, but we’re driving to Gulf shores. And when we saw the change and we were, we were driving late into the night. And older brother being older brother took, took his toy from him.

And for the first time ever, we heard this loud, no, from the back seat. And we’re like, yes. And we were, so that first fight between the two siblings and it was so great. And I will say that, you know, that the excitement over sibling rivalry has long since worn off. Yeah, but it, it was a moment of celebration.

We at home, we saw him stand up for himself that first time.

David Hirsch: Well, thanks for sharing. Um, I’m sort of curious to know, uh, what type of advice did you get, um, early on, not only about nutrition, but maybe as it relates to the education, like what type of schooling did he have?

Jonathan McGuire: You know, we, my wife is a researcher and she just dives in all folks.

So she has two masters. I’ve married up. She has a master’s in counseling and mathematics. And my master’s in the program management. Part of that was learning how to research and research. Well, you know, we went and talked to the heads of different children’s hospitals and different things like that. And I’ll say, I would say as, wow, we don’t know what to do.

We’ll make a note in his chart. And honestly, that was probably the best thing that could’ve happened to us. It sounds weird to have say. Having no direction was better than direction, but having no direction, it was better than having bad direction. And it allowed her to keep focusing and keep digging and to say, what does he need?

And what are the specialists in our area that can help in these areas and him with these things. So we would have the folks come out for occupational therapy and these different things. And when they came, they say, you know what? We’ve never seen anything like this. We’ve never seen kids. That are improving to the degree that yours is, and that are making the, just the, the progress that they are.

And it was, I think it was encouraging for them because they, they didn’t necessarily give Sarah much homework or anything. It was more our, our, you know, our cranium  neurologists and things like that that would give us exercises to do. And other folks. But we had the other common resources come in. That’s just a help document and show where he’s at.

And it was as good that, um, I think what can I say the best advice was no advice. And, uh, the biggest encouragement to us was having people connect. You know, sir, at one point at church, if somebody asks, what do you need? And I just need a grandmother. I need somebody that can come alongside us and be there for our family so I can get some rest.

And so having families like that, uh, uh, Mark and Margie Nelson out of Texas to give a shout out to you guys, you know, they were huge for us at that point when we didn’t have any family or any support system in place, they would come out and offer us, uh, an evening away, a little bit of respite, so we could get a break and have a date.

Well,

David Hirsch: thank you for sharing and not to focus on the negative, but, um, what were some of the bigger challenges that you’ve encountered? I remember there was some pretty, uh, Dramatic situations that were going on, especially with Sarah, like a loss of sleep. Um, it was very, uh, trying, can you recount that story?

Jonathan McGuire: Definitely. Yes. So about 18 months then I had, I really had no idea how bad it was getting for Sur how much she was struggling. We were living, as I said, down in Texas, we were in Fort worth area, fairly new area to us. Really didn’t have strong connections. Lack of support. Sarah was only getting two to three hours of sleep a day.

If you put all the 15 minute increments together, because that’s, that’s all that Jordan was sleeping. And so she would either try to sleep then, or she would try to research then. So she ate. Sometimes she didn’t get that much sleep. Well, I don’t care how strong you are, but you can only do that for so long.

So after 18 months, We went to church one weekend and we’re right behind the pastor and he turned around and, and he asked, how are you? And this and this a question. And this is what ended the like the one minute before he goes up on stage and starts, starts to preach. And she says, you know how honest can I really be here?

And she’s just like, well, I’m tired. Said, well, you know what, you know, what the solution to that is, don’t you? And so she said, yeah. Um, and he went on to ask, what do you need? So what do you need? That was the, that was the key question that broke the dam. And when he asked that the tears just started to flood.

And she cried all the way through the service wept all the way home on our drive, cried herself to sleep and slept for the next 22 hours.

She woke up for a few hours, cried some more and slept for another 17 hours.

And honestly, I’m not really sure how I took care of the boys during that time. It’s just sort of a blurry. He wasn’t eating much at that point. He was still nursing the degree. And so I’m not sure what, what I did with the boys, but even with all that, we’re still now years later, probably 10 years later now.

Yeah. We’re 10 years later and her health is still struggling. You know, she still doesn’t have the energy that she did before. Doesn’t have the stamina and she’s, she’s, she’s different and it’s, it’s good. It’s fine. It’s, it’s, it’s impacted part of that journey, but as part of how the journey changed her.

So yeah, that’s, that was, that was a hard time. And I tell, I told her if I’d realized how bad it was getting out, I said, you know what? This is like rape ministry. No Bible translation is needed. As I shared there, there’s so many languages that need it, but if I had known how bad it was getting with her, I just said, okay, God, you know what?

You can bring somebody else in here, but I’m packing up our family and we’re going to move back up North where we have family support and the help that she needs to get through this. And she often tells me, you know what? I knew you do that. So that’s exactly why I didn’t tell you how bad I was doing, because that ministry, what you were doing was given me a sense of purpose as I was up late, not sleeping and just trying to, trying to survive.

David Hirsch: Wow. It sounds like a pretty crazy situation, but you did end up moving back to Fort Wayne, so you could be closer to family and have support and, uh, When was it along that journey that Jordan was diagnosed with autism?

Jonathan McGuire: Um, it was early on. Um, and I’d say now at this point he would no longer be diagnosable.

Um, if, if so, I’d just be very, I know some people like to look at it as a spectrum. Other people say, well, let’s not look at a spectrum. I’m going to go to spectrum out. If you looked at it as a spectrum, he’d be very on the low end. There are. High functioning end of the, of the spectrum, where if, as he interacts with those peers, now you wouldn’t be, you wouldn’t see a difference between him and his, his peers.

He went to be a nonverbal. So now he’ll chat your ear off. And, uh, he is such a big picture thinker. And just out of the box thinker, uh, look forward to seeing what he becomes and how God used them. He still has his struggles. You know, when he’s out, he can become overly stimulated where he can become overwhelmed.

If there’s. Wild noises a lot. So we like, if we go to a concert or something we know to bring ear protection or even there’s a while where we had to, as we travel, visit different churches. So we know, Hey, we don’t know what the music’s going to be like at that church. So bring some, bring some ear protection for him at that church.

So that way he’s, he’s not in pain during the service. Um, and also high stainless environments can leave lead to him being more stressed and he knows, Hey, I need to get, I just need to get away. I need to get a break. And so a lot of times in situations like that, we, uh, we know, Hey, here’s a spot. If you’re, if you’re overwhelmed, you can go to, to get away or here’s a spot or just tap me or mom, and I can go away with you and you can just get a break and sort of decompress a little bit.

For instance, we had a party and we had a bonfire here. We had a bunch of teenagers here and he wants to, of course, do it, have friends over as well. But we also know being teenagers, things could be stressful, you know, it could be noisy and that it’s going to be busy. It’s going to be, yeah. And everybody might not think gauge with you the way your brother does or your close friends do.

So they push you a little bit more. So we talked to them, Hey, if you need to get a break here as a safe spot, you can go where we know you’re at. You can just sort of calm down and reengage with the group when you’re ready to. And so things like that, where we know that ourselves, we talked to a youth pastor and other people that are, are involved in his life just to know what he needs and communicate those needs to them.

David Hirsch: Well, it sounds like he’s made a lot of progress from those early days of being very restricted, as far as the diet being nonverbal for a number of years to maybe making up for some lost ground from what you were saying as far as, uh, as using vocabulary today. So it’s heartwarming to hear those stories.

I’m sort of curious to know what impact a Jordan situation has had on his older brother, Josiah, uh, or the rest of the family for that matter.

Jonathan McGuire: Yeah. You know, I can gauge the impact over the years. I think as we grew, as we grew as parents, the impact hopefully changed and became more positive Josiah. As a young, as a, as a child, he was very outgoing, very personable and very dynamic and just.

Yeah, it is a likable sharp kid. And then as Jordan came into our family, it went from just having the attention of two parents to having the attention of one parent. So it went from him having both mom and I to mainly just be in me that was giving him the attention and the direction that he needed. And so we saw him his personality, honestly sort of stifled a little bit from that.

And the relationship with him and Sarah struggle. And we grew, you know, Sarah and I grew, we realized, Hey, this is, we came to a point where we were more healthy and realized how Sarah could re recognize that Saturday to reengage with Josiah and, uh, restore that relationship there and also awesome. The same way I needed to be able to connect with Jordan.

So all that stress wasn’t on her to take care of Jordan all the time. And as that happened, we saw then just CYA and his relationship with his mom grow. And then also as a person where he’s now, again, he’s a very dynamic young man who were just last week. He asked me, or I suppose tonight, how did I become the only extrovert in our family?

It’s funny. It’s true. I mean, we’re, we’re a parent. I tend to be more on the introvert range and, um, It’s I think that can be a little bit challenging for him, but he goes up to people and he loves his friends. He loves having that social network and that connection. And, um, he’s also very compassionate because of his brother and I’ve never seen a more compassionate young man.

And with that, not trying to figure out how to say it. It’s not uncommon. See, as you enter that teenage. Phase of of saying, Hey, I’m, I’m too cool to associate with my brother or I’m too cool to associate with this younger group of kids who are so much a different place, but he values all ages, not in our groups, uh, because of his interaction with Jordan.

And so I’ll see him interacting with other kids who are probably half his age and speaking to them in love. And they feel like. Wow. He wants to be with me and he cares about what I have to say. And so just seeing this, this compassion come out and also then too, he has that yeah. Desire to stand up for those that are hurting and struggling.

And I’d say that this is all because of his brother, you know, years of having to watch out for his brother and care about his brother and be more sensitive about those things. And. I think that all amplified the development of the, those, uh, those personality traits and in the same token, it’s also helped Sarah and I to grow and realize what are other families going through.

We, uh, as I said, we lived in this, we lived in this very nice bubble, even, even though we both had opportunity to travel multiple many cultures around the world, it, um, we still had a bubble of what we thought life was like, And this helped us see, Oh, there’s more people that are hurting out there then than what I was aware of.

There’s people down the street from me that are, that are feeling just as isolated as the, the, the missionary and the jungle and Papa new Guinea, because they can’t get up because they don’t have the support because they don’t have connection with those around them because their focus is on their children.

And, um, yeah, so it’s, it’s really broadened. And, um, Jordan has definitely made all of us better people. It’s a, it’s a, that’s a really shifted our focus to where, you know, initially we’re married, we thought we’d be missionaries in the hut in Africa, leading a ministry here in, uh, in Indiana. So.

David Hirsch: Well, thank you for sharing.

I think this might be a good way to segue into the work that you’ve been doing in the name of hope, a new, and as I understand that the mission of this not-for-profit is to guide families impacted by special needs, through the unique face of Christ centered hope and healing. So how did you go about starting this group?

What was the vision initially?

Jonathan McGuire: Yeah, so the vision for hope new was birthed when I was in South Sudan. I mentioned these struggles that I had the privilege of helping the nationals work through and to be transparent, those struggles were exactly the same struggles Sarah and I had had when we are North of it with Jordan.

And as we talked with other families, every family that had had a child with special needs have gone through the same struggles to, you know, God, how can you be a good God and allow this to happen to my child? Basic question of why God. Uh, grief. We we’re all familiar with the grief cycle. We know there’s different stages of grief, but what about chronic grief?

Because every time my child doesn’t reach a milestone or there’s the transition that should have happened, I’m thrown back into that, that grief cycle. Is that okay? How do we deal with it? How do we process and how do we forgive God? I’m angry with you? Is that okay? You know, and can I be a Christian and be angry with God?

What does that mean with our relationship and how do we think about a future when our child will never get better when we’re still living in crisis? When those medical alert alerts are going off in the background at night, how do we build that new dream? So that’s where hope a new, the vision for hope and was, was birth officially in April of 2016.

So that’s where we started. We started with those core questions and then we developed a whole curriculum based around this, those questions and, uh, started workshops where we had online classes, where people from anywhere in the country, around the world even could join and we’d help guide them through those, those questions and bring healing and hope to their lives.

And it’s been neat to see how it’s grown since then and just how God has worked in the lives of families around the world, through it.

David Hirsch: So it started there in Fort Wayne with your family and your own experience, and then it expanded to other families. And how did you identify the families? And who’s actually served.

Jonathan McGuire: The demographic we serve is any family that’s been impacted by special needs. And so if they felt like they could benefit from our services, then we. Happily came alongside them. So it didn’t matter what the special need was because we found within this core questions, it didn’t matter the disability, the special need, but everybody had those same struggles.

So we got the word out, connecting with local nonprofits, sharing with what we’re doing, talking with the area churches. And then eventually we grew to the point where now we have a blog, uh, with the writing team that writes for us and Sarah. And I also write on that as well. And now we also have a podcast monthly podcast.

Welcome to the hope new podcast podcasts for parents of children impacted by disabilities, where we believe there’s beauty in the journey and purpose and the pain your hosts are Jonathan and Sarah McGuire.

Hey sir. Hey Jonathan. What do you think is one of the greatest challenges for moms of kids with disabilities? Well, there are many, but I think one of the top ones is learning to look beyond what our kids can’t do and learning to see what they can do. And focusing on areas where kids do Excel. Then we can use that to help them grow and develop.

We have so many people tell us what our kids, we have a online community, so we call it a laugh together, cry together, pray together community. Where people can come together and say, Hey know what? This week my child did this. And I thought it was hilarious, but nobody else gets it. Or, you know what, this week, this happened this week, we had to take our son to a group home.

It’s ripping my heart apart and I don’t know what to do, and nobody else gets it. And that group can come together and say, Hey, we get it. We understand we’ve we’ve, we’ve walked this journey too. And. They encourage each other and that real way and bring the, the hope that Christ can bring.

David Hirsch: That’s fabulous.

So you have a very robust online community. From what I remember, um, how many people are engaged in, uh, how broad of a reach is there currently?

Jonathan McGuire: It’s actually just a new startup. So we just started the community in October. We currently have 70 families that are a part of the community. We literally have people all around the world.

Of course the majority here in the United States, but we have folks from Africa, we have a family in Australia. We have another family in UK, so it’s neat to see the different, the families that God’s brought into that place. And I’ll say the depth of the conversations that we have, there are so rich, it’s unlike what you’ll get anywhere else.

And the goal is that it will be the most encouraging, real hope based community that a person can be a part of. So with that community, we, we have monthly themes that help guide conversations. Uh, we have topics, you know, such as newly diagnosed resources for the families, uh, resources for parents. We have monthly masterclasses that, uh, the families can participate in for free, where we bring in experts in the field.

We’ve had master classes on marriage. We’ve had master classes on siblings this month. We have masterclass on spiritual issues. And so, yeah, there’s just a plethora of resources that go into that community. And, uh, we have live meetings, you know, we have Wednesday soul care, uh, where we, uh, available to pray for our members.

We have office hours where our, our members can, uh, type in and ask questions and interact with other members of the community. And so it’s a, it’s a, it’s a neat place to be.

David Hirsch: Yeah, well, I love what you’re doing and I, I love the fact that it’s through all these different mediums, the blog, the podcast, you can make reference to it, but I saw on your website that there was some videos as well.

And there’s a phrase that I picked up on. I think it was from one of the very early on podcasts. And I can’t remember if it was you or Sarah, but the thought really stuck in my mind, something to the effect that there’s beauty in the journey and purpose in the pain. I thought that was very profound.

Jonathan McGuire: Yeah.

That’s our tagline and our podcasts. Every podcast you listen to, we make reference to that because this journey is hard. I’m not going to ignore that. And I don’t want to downplay that for our dads out there who are trying to learn now, how do I be a husband? How do you be a father? And this thing that life has not prepared me for, we can become so inundated by the hard that we can’t see the forest through the trees.

There comes a point in the journey and all our members not might not be there, but at some point you’ll be able to look back and say that there is beauty in this. This is, I can see how God is using this. God is bringing about purpose in this thing. That is so hard. So yeah. And then I can say that to encourage our listeners here today.

Even if you can’t see it today, be encouraged that it will come where you can look and see that beauty. And you can see. What, what is happening as a result and the purpose here.

David Hirsch: Excellent. So under the banner of advice, I’m wondering what type of advice you can offer a dad or a parents for that matter, who are raising a child with differences?

Jonathan McGuire: Yeah, there’s a couple of things. One, this is the hardest bit and it’s to love your wife. Love your family. As Christ loved the church. Our lives that, that we signed up for of, well, I’ll have you say, I didn’t sign up for this life. What are you talking about? But our lives that we have that we, this commitment we made to our spouse to our families is different than, than what we planned from the beginning.

Even if you adopted and you knew we were getting a child with special needs, it’s still different than what you planned from the beginning, and it’s going to be hard and it’s going to take commitment. It’s going to mean sacrifice. And it’s going to be times there’s going to be seasons where you might feel like, I don’t know if my spouse loves me.

She’s giving all my, all her attention to our child. She’s not even focused on muni anymore. No, we haven’t been intimate in however many months or whatever. And this is where the rubber meets the road, where it comes, where, where we actually. I have to look at what does it mean to love our families as Christ loved the church?

What does that sacrifice look like? So that’s the hard, that’s the hard advice. Here’s, here’s the fun advice because where we focus tends to shape how we think. And if we get focused on the negative, it tends to multiply and we tend, we tend to get stuck in the negative. So, so what are the gifts that your family has?

And it might be hard to find, but look at your child with the disability with special needs and say what’s particular gift. Does my child, have I heard somebody say once that God has given everybody a gift and it doesn’t matter, he didn’t put a, he didn’t put a little exception clause there. He didn’t say I’ve given everybody a gift except for children with special needs or except for children’s disabilities.

So God has given our children gifts. What’s, let’s look at these positive things, what gifts to our children bring to the table and what has God given them. And as we start identifying those things that will then help us to get to the point where we, we do start to see that beauty in the journey and that purpose and the pain.

David Hirsch: Yeah, well, a well-spoken and, uh, it’s not lost on me that your boys are still relatively young. No, you’re not only being parents to both the boys, but you’re, you’ve got this excess capacity where you’re helping others, not only based on your own experience, but collectively, you know, you bring a lot of wisdom to the table.

So it’s very impressive. Again. Thanks for sharing. I’m sort of curious to know why is it that you’ve agreed to be a mentor father as part of the Special Fathers  Network?

Jonathan McGuire: I’ve been in that place? In time still am in that place of loneliness. You know, I’m a dad, I’m busy providing for my family. I’m also a businessman.

So I’m focused on growing this business. And I find at times in my journey where it’s been hard to find that person work, that could speak into my life and I’ve, I would have love to have that. And, you know, it’s, it’s, it’s an intimidating thing to know who do I talk to during this time? Who, who, who is not going to look at this as being an imposition and when I’m having a struggle with my spouse, what can I do?

Where can I go? So I can better be there for my spouse. Be the better husband, be the better father that I want to be. You know, at the beginning of this podcast, we’ve talked about that tribe, that community and the tribe members dancing with each other at night. And how important that was to their culture.

And just how I think nature of where we live, where we, how we’ve grown up. Many of us grown up very individualistic, and then we find ourselves in these situations where we’re isolated and don’t know who to turn to or where to go. And so having that mentor as part of finding your tribe, so that way you can thrive when the future may be unpredictable and you might still be in that crisis.

David Hirsch: Well, thank you for being part of the network. We’re thrilled to have you let’s give a special shout out to our mutual friend, John Fellageller, who is also a special father’s network, a dad to dad podcast, number 65 for helping connect us.

Jonathan McGuire: That’s great. I love it. Thank you, John. And, uh, yeah, we’re privileged to have him as part of our writing team and he had so much, and, uh, I encourage listeners to check out his, uh, his blog and, uh, Yeah, go back, go back and listen to his episode as well.

David Hirsch: Is there anything else you’d like to say before we wrap up?

Jonathan McGuire: Thank you so much for what you’re doing. It’s such an incredible ministry. Yeah. Love it. And thanks for, thanks for having me to be a part of it.

David Hirsch: You’re welcome. If someone wants to learn more about hope, a new the blog, the podcast, the videos, the work that you do, or just contact you, what’s the best way to go about doing that.

Jonathan McGuire: So they can go to our website, which is hope, hopeanew.com. And they can check out everything there. You’ll find links to everything. There you go. Under the resources page, you’ll find our blog, our podcasts, and about anywhere on the page, you’ll see, uh, information about the community as well. So we’d love to have you be a part of the community and get to know you more there.

You can also go to our Facebook page. And again, that’s hope a new as well. And, um, you’ll, uh, you’ll find that you can recognize it. We have the logo with the butterfly on it. And so a green butterfly, so is pretty easy to recognize. So check us out there, connect with us there. You can message me on there and I’ll personally respond and, uh, would love to, uh, uh, connect with you further.

David Hirsch: I’ll be sure to put those in the show notes, so it’ll be easier for people to follow up. Perfect. Jonathan, thank you for taking the time and many insights. As a reminder, Jonathan is just one of the dads. Who’s part of the special fathers network, a mentoring program for fathers raising a child with special needs.

If you’d like to be a mentor 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 enjoy the conversation as much as I did.

As you probably know, the 21st Century Dads Foundation is a 501 c3, not for profit organization, which means we need your help to keep our content free. To all concerned. Please consider making a tax deductible donation. I would really appreciate your support please, also to review on iTunes, share the podcast with family and friends and subscribe.

So you’ll get a reminder when each new episode is produced. Jonathan, thanks again.

Jonathan McGuire: Thank you.

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.

Tom Couch: If you enjoyed this podcast, please be sure to like us on Facebook and subscribe on iTunes or wherever you listen.

The dad to dad podcast is produced by Couch

Jonathan McGuire: Audio for the Special Fathers Network . Thanks for

Tom Couch: listening.