039 – Author Mark Maguire on raising a son with Cri Du Chat Syndrome.

Transcript:

Dad to Dad 39 – Author Mark Maguire on raising a son with Cri Du Chat Syndrome.

Mark Maguire: Some people say one day at a time, some days it’s one hour of the time, some days it’s 15 minutes at a time. And that was some of the best advice I ever got when I was overwhelmed with sadness, grief, anger, and I had to just pull it together and say, Hey. Make it the next 15 minutes you can do.

Tom Couch: That’s Mark Wallace, McGuire a noted author, blogger and father of two boys, Patrick and Andrew, who was diagnosed with, to Shaw syndrome.

Mark has written a series of novels called the Alexandria rising Chronicles. And he’s our guest on this dad to dad podcast. Now here’s our host, a man who spent decades advocating for fathers David Hirsch.

David Hirsch: Hi, and thanks for listening to the dead 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 your dad looking for help or. We’d 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.

Mark Maguire: So let’s listen now to David Hirsch’s conversation with special father Mark Wallace, Maguire.

David Hirsch: I’m thrilled to be talking today with my friend, Mark Wallace Maguire of suburban Atlanta, a father of two, a journalist and author Mark.

Thank you for taking the time to do a podcast interview for the Special Fathers Network.

Mark Maguire: Thank you so much for having me. I really appreciate all the work you’re doing for us fathers in these unique positions,

David Hirsch: you and your wife, Jamie had been married for 15 years and other proud parents of two boys, Patrick, age 12, Andrew, age 11, who was diagnosed with Cru to Shaw syndrome.

Let’s start with some background. Where did you grow up? Tell me something about your family.

Mark Maguire: I, uh, I grew up around the South. My father was a minister. So we moved about every two or three years. I’ve lived in about 15 cities, but all below the Mason Dixon line, we had a very interesting family dynamic with that going on and the church playing a role into our lives for good or bad.

That was kind of the basis where I came from.

David Hirsch: Excellent. And I think you mentioned you have a brother who’s three years younger than you.

Mark Maguire: I do I do. I’m I tell people I’m the black sheep of the

David Hirsch: family.

Mark Maguire: He’s the more successful once I have a dry sense of humor, but, uh, many, a truth is said in jest. He got, he got a degree in engineering and I got one in English.

So you can imagine which one’s more successful.

David Hirsch: Uh, what’s his name?

Mark Maguire: Jonathan. Jonathan,

David Hirsch: Jonathan. Okay. Well, I think growing up with at least one sibling, A different dimension to your life as he was younger, you were the bigger brother. So he knowed out, looked up to you for whatever number of years as well.

Mark Maguire: Yes. Yes. We’re, we’re very different. But, um, I think coming from a similar background, we definitely have some bridges,

David Hirsch: but so you mentioned your dad was a minister. You moved around a lot when you were younger. How would you describe your relationship with your dad early on, in the middle and then perhaps now that’s,

Mark Maguire: that’s a good question.

It’s complex. As you know, all of our relationships with our fathers are when I was very young, we were very close. Some of the fondest memories I have or am sitting with me on the couch and almost every night we would read part of the Chronicles of Narnia and just very beautiful how Sian memories, and then candidly, as he ascended the, the steps in the ministry.

Well, I saw him less and less. He became a workaholic is I tell people not for all the wrong reasons, many times he was out late visiting shut ins or going to the hospitals or funerals or whatnot. But, you know, bottom line was, I didn’t see him, uh, starting probably around the age of 11 or 12. And then throughout that period, he hit a wall around when I was 14 or so.

And didn’t work and was in a pretty bad way for about five more years. So long story short, when we were young, we had a close relationship and then he was a workaholic and then was out of work and not doing well. So I guess about 10 years or so, we didn’t really talk. And when we did, it was more shouting, but since the age of 19 or so, we’ve been able to, to build some bridges, like all bridges there’s.

There’s chunks in it and there’s chunks missing and there’s a lot of water under beneath, but we’ve, we’ve been able to form a pretty good relationship despite everything.

David Hirsch: Well, that’s interesting. Thanks for sharing. And is your dad still administering or what is he doing now?

Mark Maguire: He, he started his second career was probably 25 years ago.

So when he left the ministry, he left the pulpit pretty much for good. You restarted his career, got a second masters. And then he retired about two years ago. And through that time he would occasionally interim pastor. He would do things like serving the Lord supper in jail. He was still ministering, but, but not from the pulpit.

Got

David Hirsch: it. So, um, when you think about, um, lessons that you learned or important things that you can take away from your relationship with your father, what comes to mind?

Mark Maguire: No. I had some, I asked that the other day and I felt terrible. Cause the first thing I said was don’t ever be a workaholic because it doesn’t pay off.

You know, it was a ghetto, Java tries, it’s a humor. But I said, Hey, it doesn’t. I said, I’ve seen it firsthand. I learned that even though I went through my period early in my career of pushing myself to ridiculous limits. But I did learn that. I mean, you can learn from the good as well as to that. And I learned that your family should always be first.

Because those are the relationships you can’t, you can’t control Z. You can’t go back on you. Can’t rebuild. You know, your son will never be eight again. But then also I learned, I learned being true, being true to yourself, being true to others. I learn doing the right thing, whatever the situation is, if it’s a widow who’s alone, when you go visit her period, and also you treat everybody the same.

I learned that was very critical. Learning that from him, he had done civil rights work. It didn’t matter if you were the janitor or us Senator, he treated everyone saying no, that goes back to respect and being true and being true to yourself. So I definitely learned a lot of good things from

David Hirsch: those are some really powerful takeaways.

Thanks for sharing. Let’s talk about your grandpas. What role, if any, did they play on your dad’s side first and then your mom’s side?

Mark Maguire: Yes, my granddaddy. Um, you can tell I’m from the South on granddaddy, but, uh, he was the kind of prototypical world war II veteran. John Wayne played football, uh, briefly in college.

Um, civil servant gentlemen, kind of detached. They have very strong presence and we were. We were close in many ways. He would often send me newspaper clippings from the Georgia football game. As you know, this is pre-internet, this is the eighties. We wouldn’t get any coverage. And he would cut out the box score and usually write a note and send it to me.

And he wasn’t very lovey or Dovie, which is not a criticism. That’s that generation. But by example, I learned a lot of those same tenets. My father taught me, treating everyone the same. Saying hello to people shaking somebody saying I’m looking them in the eye and I’m always doing the right thing. He was a deacon in his church and a superintendent and a city Councilman.

Those titles don’t make someone good. I’m not saying that, but by seeing how he treated himself in those situations where there wasn’t pomposity or anything like that involved, but service. Uh, I learned a lot from him and we had a, we had a good relationship as different as we were. I was, uh, a young poet and artists and songwriter, and was much more stern and so forth, but there was a lot of love and admiration there and he passed away in, uh, 1990.

Yeah.

David Hirsch: Well, it sounds like he had an important impact on your life. Um, as a role model, bigger than life, right? The way you described him as a world war II veteran, John Wayne type of individual. And, uh, if it wasn’t for grandpa’s candidly, I don’t know where some of us would be myself included. Uh, that was my father figure growing up.

So Def

Mark Maguire: definitely. And it’s, you know, just kind of joking about southerners, you know, and I think this is people in general, but you know, the Japanese have their hero worship and we have that down here. So. We tend to put them on pedestals, but hopefully along the way, we learned some of their faults as well.

So we can learn from that too.

David Hirsch: Absolutely. So that was your dad’s dad. How about on your mom’s side, your grandfather on your mom’s side? Yeah,

Mark Maguire: my pop pop. Uh, he’s still with us. Thank God. He, um, he was from that very same generation is in his nineties now. And. We weren’t, I would say, and we aren’t as emotionally close and that’s no criticism to him.

He’s from Nebraska, served in Korea is very much a black and white type of numbers person. But through his actions, he really showed a lot of love to my brother and I, every summer they would load us up in their RV and in my affectionately called me mauling. Drive us around the various places around America.

They showed us the West, they showed us the North and we’d spend two or three weeks with them. And that was a real blessing of traveling, such a great form of education. So I told somebody that he could be a bit stern and cold, but again, his actions spoke grandly of, of where his love

David Hirsch: was. Yeah. Well, I think one of the mantras that I’ve lived by, which is sort of what you were referring to, and I hope that people don’t think of me as turning cold is that actions do speak louder than words.

Right? People say things and then there’s people that do things and sometimes they reconcile and sometimes I just don’t. And I think that, you know, um, I would err on the side of taking action and hopefully being a good role model to others. So that’s fabulous that you had a meaningful relationship with both your grandfathers.

So, was there anybody else that served as a father figure while you were growing up or maybe more recently for that matter? You know, when

Mark Maguire: I was growing up, I had, um, had a basketball coach for one year, Rodney Webb. I tracked him down years ago. I’d like to reach back out to them. I had one year and it was just, it was the way he coached the way he communicated.

He wanted us to do our best every day. And he had that unique ability of pulling out your best without just yelling and, you know, throwing chairs and being negative. But by pushing you and encouraging you and using humor saying things like that’s the way the rebound wire, that’s why I put you on this team.

I knew you could do it. And. That and a million other phrases, but E for that year where my dad was out of the picture for those years, rather, he was the primary role model. And again, the funny thing is it’s one year of my life, and yet I can never thank him enough. The last, I guess, 15 years, 15 to 20 years as a professional, I’ve had two or three bosses and managers that have been great, especially, uh, Wait from the mine, Jay Horton, who kind of retaught me a lot of values.

If that makes sense, the older we get, it’s easier to be cynical. You don’t feel as valued. I don’t know the psychological term for it, but maybe your self esteem goes down or, or whatnot. And you forget some of the core values and Jannie really. He brought me back along to the. A lot of the same tenants I grew up with, he talked to everybody to see was the same.

He was associate publisher of a very big newspaper chain. He never had a negative word. And I couldn’t understand that and attend to defer to the negative side of things. Sometimes it’s one of my weaknesses, but he was always positive. He said, hello to everybody. And his main goal was to lift people up.

And while we weren’t a white guy, He inspired onto our member if you’re having a bad day. And if you’re depressed, if you’re upset, somebody else is having it too. And it’s your job to lift up their debt and to compliment it. And that’s something I’ve, I’ve really tried to do consciously since I met him.

And especially after his death. Yeah. Very

David Hirsch: powerful story. Um, and words to live by not just in a professional environment. But, uh, at home, right. When you know, your wife’s having a hard day or one of your kids is having a hard day, you know, is to take that as your responsibility to try to do something about it.

Mark Maguire: Right. I was telling my wife the other day, we’re having some challenges with our oldest. And I said, you know, the thing is right now, we have got to compliment him at least once a day on some, I know there’s psychology books that said it should be more so and so, but you know, if I don’t see them until I get home at six 30 at night, I’ve got about an hour and a half, two hour window.

And if it’s banging heads on homework or no behavior or school activities, I’ve got to find somewhere in that time to reassure him that I love him. And I’m proud of. So, yeah, like you said, definitely it goes far beyond the workplace. Well, I

David Hirsch: love the thought about being more intentional about expressing yourself because as men, we’re not great communicators on average.

So I think we need some role models like that. So thanks for sharing. So you and Jamie have been married for 15 years. I’m curious to know how did you meet?

Mark Maguire: We actually, um, I’m one of the luckiest sons of guns. I know I went to college with her brother and for some reason, and I was not a Saint college and I wasn’t a model student, but for some reason, two years afterwards, he introduced me to her and thought we’d be a great match.

And it worked out. I was thinking. Joshua. Do you really want to introduce me to your sister? She’s a Saint. This is a beautiful saintly woman and I’m a bit of a rough yet. That’s how we got introduced.

David Hirsch: That’s a great story. So Joshua went from being a good friend roommate in college. Brother-in-law

Mark Maguire: right.

Definitely. And always, usually every Christmas always get him something and say, Hey, no gifts for the uncles and aunts and so forth. But I said, Hey, this is the guy who introduced me to my wife. I can at least in my five or $10 gift any. And he’s the no offense to my other brother in laws. He is the coolest know.

David Hirsch: I love it. Thanks for sharing. So, uh, you mentioned, uh, you were an English major. You went to a Berry college in North Georgia. And I’m wondering if you could just be brief, but, uh, give the listeners a sense for your career.

Mark Maguire: Oh, my career post-college has I said I’d never worked for a newspaper and I’ve been working with newspapers and magazines.

20 years started out as a Cub reporter and managed one time up to half a million circulation of when he seven weekly papers. I currently work at a business to business magazine, have my own creative agency, and I’m an author and I’ve had six books published.

David Hirsch: That’s fabulous. What I heard you say is that you would never do something, right?

And whenever you hear your self saying the word, never, you need to make a note of that. Maybe put a timestamp on it because invariably, you’re going to be eating those words.

Mark Maguire: I know that’s been my own experience a few weeks ago. I told somebody, I said, I’ll never play the lottery. And now I’m thinking, well, now I need to play the bloody lottery.

And when a bunch of money

David Hirsch: are you talking about the. Mega millions, which is up to like one point $6 billion or something. Isn’t that what you’re talking about,

Mark Maguire: right? Yeah. And I’ve just, I’ve never played it and

David Hirsch: I won’t

Mark Maguire: get into the weeds on why that is, but yeah, like you’re saying, Hey, I’ll never win any money while I’ve said it.

Now I need to go win that money. Right. There you go. Kind of reverse the negativity there.

David Hirsch: You have to play to win. That’s one issue,

Mark Maguire: right? That’s all right.

David Hirsch: I’m not a big lottery person myself. I can probably count on one hand with many fingers left over how many lottery tickets have extra button my life.

And, um, I’ve heard it being referred to as a tax on. People are bad with math,

Mark Maguire: right? Exactly.

David Hirsch: So let’s switch gears. Um, talk about the special needs community first on a personal level, and then beyond. So before Andrew’s diagnosis, did you and Jamie have any connection to the special needs

Mark Maguire: community? We had a small connection.

Her nephew trip has spina bifida. So she’d been very close to that growing up. And I’d met trip. He was in our wedding. I love him. He has a beautiful indomitable spirit and I’ve done some volunteering two or three times with special needs adults. And we had some special needs adults at one of the churches.

My dad ministered in a special class for them. So I was around it, but I wasn’t really around it. I wasn’t immersed in it. I knew it existed. I couldn’t quite figure out why it’s I call it the great riddle, but I’d had some connection, but nothing in

David Hirsch: depth. Would it be fair to say you had more of a tangental relationship with the special needs community?

Mark Maguire: Yes. Yes, definitely. So

David Hirsch: what was your first reaction? If you can go way back when, when Andrew was diagnosed and at what age was that? He

Mark Maguire: was in the NICU for the first three, three and a half weeks after he was born, he was a month premature and we didn’t know if anything was wrong and they did the genetic test.

And, and when we got it, it was, it was a mix of shock and more shock and more shock. And then that was immediately followed up with rage. Okay. Later dealt with the depression and the bargaining and those things. But at first I was, I was in shock and then I was just furious.

David Hirsch: So what period of time did that last?

I

Mark Maguire: would say the shock lasted for probably a good maybe up to a year. Wow. Yes. And it’s, I didn’t dial out. My still worked, you know, our other son was, you know, only a year older. But I really spent a lot of time with, with Patrick. I didn’t do a lot with Andrew. Like I did with Patrick, the changing of the diapers and the feeding him and all that I did som, but I don’t know if it was because he felt closer to his mom or he could sense that I didn’t feel close to him.

And then the rage, you know, it, it comes and goes. I’ve gotten it a lot more in the control the last several years. But for, I would say the first. You know, three to four years, it was pretty, pretty intense. And by that I didn’t go around just, you know, taking trash cans and yelling at people. But if someone touched on the issue, how’s your son or, well, what’s wrong with your son?

Or why can’t you Kim, come to the party, things of that nature, anything that dealt with his condition, I would get angry and it was usually angry at God or angry at myself or. Not necessarily angry at the person who asked the question, just kind of a, I don’t want to call it a misplace, but I was just so sad and so angry.

This happened that are really, I kind of cut myself off from everybody shut down there for quite a while.

David Hirsch: Sounds like a dark period, looking back on

Mark Maguire: it. You know, it really was, it was, you know, as I was telling someone. About. I said, you’ve got to get out the anger. And I dealt with that quite a bit, growing up, moving around a lot.

I wasn’t very happy about that, but so I’ve learned some lessons that I told him. I said, get it out. It doesn’t do any good. I remember one Sunday after church coming home. And for some reason I vividly remember this and I was so mad at God. My foot finally got me to go to church and I was just sitting there going, this is, this is all a farce.

I’m not going to sing. Our God is an awesome God. Awesome. Today, look at my kid. This is an awesome, and then I went home and there was a thunderstorm outside and I went outside with an ax and cut down a tree. That was a dead tree. Like I said, I wasn’t evil in my rage, but I just, I was so angry and I was so upset and so confused.

So yes, that went on for probably three. Three years or so, pretty powerful.

David Hirsch: Thanks again for sharing. Mark. I’m wondering when you look back on it, whether it was during that period of time, or maybe shortly thereafter, uh, what type of advice did you get

Mark Maguire: early on? I would say 90% of the advice I got was worthless and it was just the tired cliches.

God, won’t give you more than you can handle. God gives special needs kids to special parents. And I just, it. That’s not even biblical much less psychologically sound in my opinion, but I did get a couple of people gave me some wonderful advice. One was my uncle Mike and the man had gone through at that point, just ridiculous tragedy, lost both his sons.

He said, let’s, let’s sit down for lunch sometime. I said, okay. And we sat for lunch and he goes, people will say things to you. And the thing I’ve learned is you just politely nod and walk away. You know, you politely nod. He listened to him and say, well, I got to go handle some, just tune it out. You said in the second thing is, and he wasn’t saying to be rude, but you know, to, you know, very deferentially say, okay, thank you.

Thank you. The second thing he said that has stuck with me since, because he said some people say one day at a time, I said, yes, sir. He said some days it’s one hour of the time, some days it’s 15 minutes at a time. And that was some of the best advice I ever got when I was overwhelmed with sadness, fusion, and grief, anger, and I had to just pull it together and say, Hey, 15, make it the next 15 minutes before you can do.

And that was great advice. And then some of the best other advice I got was may re Sam’s and she founded the Joseph Sam school where Andrew wound up going and some of the best, it was never any direct advice from her, but it was when we first went to that school, we went into her office and I’m overly dressed in a suit.

You know, we must see if our son can get in the school and so forth. And she just sat us down and said, how are you doing. Are you hanging in there? I know it’s very tough and she had had a special need. So, so hearing it from somebody with some legitimacy, some skin in the game, per se, and hearing the, the empathizing rather than the sympathizing, that really kind of taught me a lot about.

No it’s Frederick beaten or an non right now. And I’ve talked about, you know, some of the most important things we can do is just to listen. It was having that, not necessarily advice, but to have someone to listen to, and to have one to say, Hey, I know it’s tough. You’re going to make, and those were the two people that really, really changed my outlook during here.

David Hirsch: Yeah. Well, you’re very fortunate to have met Avery Sams. Um, Then steeped in her way of doing things. And I imagine that the school that you made reference to that Andrew has gone to has had a profound impact, not only on Andrew, but dozens and dozens and dozens of other young people with special needs over the years.

I do want to go back to your uncle Mike, because you told me in a previous conversation that he lost both of his sons, one to a drowning and the other to suicide. That’s a. A parent’s worst nightmare is to lose a child in his case, both his sons. So the authenticity of the messages that you shared, the one about being polite and nodding and walking away, which is not to engage, not to take the bait, not to roll around and the anger and the sympathy and all the challenging thoughts that you have.

A very powerful, easier to talk about them do. And then the second was, you know, that’s a cliche, you know, we only get one day at a time. It’s the truth as well. Right. We only get one day at a time. Um, but sometimes that’s a long period of time, 24 hours, the breaking that up into smaller pieces one hour at a time, or even 15 minutes at a time.

Right. Cause that seems much more manageable and that’s a. Psychological tool, but I think we can all embrace or use at different points in our lives, whether it’s raising a child typical or otherwise it could be doing something. Uh, another thing that comes to mind is like running a marathon. Right. You know, if you’re halfway through the marathon and you’re feeling like I’m just, I don’t have it today, but you can think about the fact that you’ve got 13 miles to go, or you could say, Hey, I just need to make it to the next mile.

Right. Just focus on the next mouthful.

Mark Maguire: That’s right. That’s right.

David Hirsch: And then when, when you get there, the next mile post, the next mile post, and before you know it, Hey, I’m almost there. Right? So I think that a lot of things in life that are complicated or overwhelming, um, if you try to hold on to them all at once, it’s going to be crushing you and whatever it takes to break that problem up into smaller pieces to solve the puzzle.

To persevere to endure, whatever it is that you’re focused on is a success strategy. And that’s really at the end of the day, what we as dads want to share with one another, for those of us that have some experience right. To the younger guys, um, as you demonstrate, you know, by your actions as well as what’s worked for you, some of your success strategy.

So I don’t make the same mistake that I don’t. You know, bottle up and try to figure it out on my own, which is a recipe for disaster in most cases. So again, thanks for sharing.

Mark Maguire: Oh yes. My pleasure. I mean, I tell people, I don’t know a lot in my life, but I’ve learned a few lessons and I’m pulling the past some all, so,

David Hirsch: so I don’t want to drill down too hard, but I’d like to know what some of the biggest challenges that you’ve encountered with a Andrew situation.

Yeah.

Mark Maguire: David. No, and that’s fine. It’s um, I think I know my wife’s had the challenges of, of getting care and that’s everything from wrestling with Medicaid, finding a good, no OT or PT person. Um, the biggest challenges I’ve had. I mean, it’s, he’s not toilet trained. We’ve tried that. We tried that two or three times a year.

You he’s still can’t brush his teeth. He’s has hypotonia, which affects his muscle tone. He got it yet. It’s gotten a lot better. Like I said, he’d never walk or talk and he does walk and talks, not the most enunciated, but we’ve been blessed there. Um, but you know, we’ve had those physical challenges and then there’s, there’s still the mental challenges, you know, you were just saying, you’ve got to break it down into increments and that’s one of the things.

If I sit there and go. What in the devil are we going to do when Andrew turns 22, 23, does Georgia has a terrible system set up for disabled adults? What are we going to do? And now that’s something we’re working toward. But if I think about it, I’m going to lose, lose my mind because it’s such a huge issue.

Another challenge we’ve had is. If he wants to go to the store, we’re going to take them in public. We aren’t ashamed of our child, but now the challenge is he’s so big. If he grows a fit in the store, it’s not just a commotion. I mean, it’s an issue and, you know, picking up a 90 pound and who’s flailing and carrying them out to the cars, not exactly what you’d want to do on a Saturday.

Also, as he’s grown, he’s prone to violent outburst on occasion. He’s, you know, he’s, he’s given me a chip tooth and scratch my wife’s corny and attacked his brother. And it’s not every day, but it’s close to it. So those have been the, I guess, the physical challenges. And as I mentioned, you know, there’s always a spiritual aspect and there’s the, yeah.

The mental fortitude, him and I have gotten a lot closer. Thank God. And we were, when he was first born, they’re just that mental, okay. Focus. What do I need to do? How do I need to do it, sacrifice this, but I sacrificed it for Andrew. So let’s remember you did it for a good reason. No, I mean, I know there’s a lot of layers in that answer, but, um, but that’s just the way it is,

David Hirsch: you know?

Well, thank you for being as candid as you are. Uh, one of the things that I really, really admire. About you. Uh, the writing that you’ve done is the authenticity, which, you know, it’s not for sympathy. It’s just sort of telling it like it is right. Cause I think the perception misperception is that everybody’s got it together.

Mark Maguire: Right.

David Hirsch: You know? Cause when you see other people, whether it’s in pictures like on Facebook and social media or you just see them in public, they don’t see what you don’t see what’s going on behind the scenes. Right. And that’s what you’re describing here, again, not for sympathy, but just to say, Hey, you know, these are everyday real challenges.

And, um, if you can put it in perspective, you know, it, it allows others who are going through some of those same issues who perhaps are not as good at communicating about them. You know, a sense of relief, like, Oh, I can relate. And. That’s very powerful, very powerful. So thanks again for sharing. So have there been some important decisions that you and Jamie have made to deal with the outbursts to deal with the violence that’s impacted you?

Jamie Patrick, and you know, hopefully not a lot of other people right

Mark Maguire: now and it hasn’t been a lot of people. I think he just attacks the ones he loves he’s on medicine. He’s not overmedicated. But we do have them on an antidepressant and anti-anxiety, and we work with them on some behavioral issues. And he’s had a behavioral specialist at times, and I don’t know if that’s any good or not, but we’ve tried and we’ve tried three or four different medicines.

So we try everything. We can, you know, the, one of the most challenging things is, is if you talked to other people in the crew to shock community or get on a Facebook page for members of that community, a lot of it’s. Just kind of like, it is what it is. They, they self harm, they harm others. They punch holes in walls and throw dishes.

So our goal is to try to, there’s not a magic magical cure or magic bullet or whatever, but we want to do everything we can to find the best thing for him to deal with that. And I don’t know if that’s going to be. Another medication or eventually if it’s going to be a companion dog to sooth him, I honestly, I don’t know, but we we’ve done everything we can.

And some nights for 30 minutes, we have to lock them in his room so he can calm down. I know that sounds terrible when it is terrible, but you know, if he’s, every time he comes out of his room, he’s attacking one of us, you know, you kind of have to take those steps, but we’re just. We’re trying everything.

We can, every book and medicine and, you know, reward and discipline and carrot and stick, we

David Hirsch: can. Yeah. Well, I admire your perseverance in seeing this as not a sprint, but a marathon and you have to pace yourself. Right? Cause it’s like you said, there are no silver bullets. There’s no easy answers. And my outer reaches out to you and Jamie for that matter.

So I’m thinking about the fact that Patrick’s the older brother by a year. I’m wondering what impact Andrew situation has had on his older brother or the rest of your family for that

Mark Maguire: matter. Um, for Patrick, it’s been very tough either you Barnabas to adopt years ago, and it just wasn’t in the cards just between finances and.

You know, you’re rolling the dice again. We felt like we’d already, you know, rolled the dice on the DNA lottery and lost once. And prior to that, we’d lost another one. My wife was pregnant, so we just, it’s just, it wasn’t in the cards, but he’s Islam only he’s resentful of his brother. He was less resentful on when he was younger.

But I think now that he’s more cognizant of the situation. He’s not nasty to him outright, but I could tell he gets annoyed with him. He gets tired of them. He’s got quite cynical about his brother’s behavior lately, which I can’t blame him, but you know, is Andrew getting you, you know, and he’ll say, well, of course you is, what else does he do?

And you can expect that attitude from a preteen, but it’s still, it’s a bit heartbreak, but we’ve provided every outlet we can for Patrick, um, for him to. Lead a quote, normal life. We still let him go to camps and we can’t take vacations as a family, really with Andrew. But Patrick will take a vacation with me for a few days.

Take a little one with Jamie. So we’ve done everything we can for him. So he’s not too recent.

David Hirsch: That’s gotta be one of the bigger challenges

Mark Maguire: it is. I mean, brothers are challenging. It’s challenging, but yeah, with him, we just said, you know, when Andrew was born, it’s like, we cannot. Amp string Patrick’s existence because of this.

And we made a real point, even if it’s, you know, Patrick and I went to DC for a weekend a few years ago, and that was awesome. Mmm. And then if it’s little things like, Hey, Patrick wants to take mommy on a date and they’ll run up to the waffle house. That’s not exotic, but we’re still trying to give him personalized attention.

Cause I know it’s tough

David Hirsch: for him. So let’s talk about, uh, special needs, uh, beyond, you know, your own personal experience. You started blogging years ago. Um, you wrote the book, which is an ebook confessions of a special needs. Dad starting in Andrew’s age eight. If I remember, and the book is broken into two parts, uh, one is labeled honesty and hope.

And then the second part is that’s what she said, which is more your wife Jamie’s perspective. I want to make reference to a couple of things that I remember reading. And one is the authenticity about your struggle when you first started doing these blogs, what, what were you thinking? Was it more therapeutic for yourself or were you thinking more forwardly?

Like this might lead to something

Mark Maguire: I’ll tell you. It’s kind of a strange story, but I was in a pretty serious bicycle accident about three years ago. And, um, during my, my convalescence per se, I did a lot of thinking to make a long story short. I talked to a very good friend of mine, Adam Miller. It was kind of the whole, what do I want to do with my life?

What does God want? And it wasn’t a near death experience. So it was a near enough and, you know, to bring it back to summation, I just, I thought, you know, I have this experience. I have this gift to serve surrender. I need to share this. And I had been at the point then where I was far enough away from that first year or two, you know, I mentioned the chopping down trees and the thunderstorm and things of those nature where I could get some insight and some space where I could see this is how I felt.

And then the other, the big thing that propelled it was, I’ll never forget when Andrew was two months old, I took Patrick to the. Bookstore. He was still in a stroller and I went straight to the psychology section. Hey, let me get a self help book on how to be a father to a special needs child. And there was nothing, not one book.

And then over the years, I’d look on Amazon. I found a couple and there’s some good ones out there. And then there’s, you know, a few good, special needs stead blogs out there. There’s more than a few. But when I started writing this, there was just, it was just a void except for a few of them. And I thought, this is my way to share what I went through.

And if nothing else, a new father out there, a new father of a special needs kid is going to look at this and say, thank God. I’m not the only one. And then secondly, if they could show it to a family member and she said with males, we have trouble communicating. I agree. You can say, read this blog. This is how I feel.

So it was kind of two-pronged I had, I had kind of done my own therapy, um, as far as therapeutics and dealt with a lot of the issues, but, uh, I felt, and I don’t want to sound, you know, self-righteous or anything, but I felt like it was a vocation. It was a mission for me to share this. Um, because again, when I came out of.

That first few months with Andrew, I was lost and I was sitting there just going, God, please give me one, one person I can talk to about this or one person I can share it. So that was really the impetus of,

David Hirsch: yeah. Very powerful. Again, thank you for sharing and being as authentic as you have been in your communication.

Um, I think you had mentioned, uh, earlier in our conversation that, and you wrote about this as well on one or more of your blogs. That you couldn’t talk to anybody other than Jamie for months about the situation. Right? What was it, what was it that had you put these blinders on? How did you overcome that?

Mark Maguire: You know, I think I was, I was angry. I was terrified I was a Raul nerve and I could go into work. I could compartmentalize, I could shut it off. And just work and that was good. I didn’t have to think about home. I didn’t have to think about, and for, and to me that was noble. I’m here working. I’m getting the money to pay for the therapist and the pay for the extra work.

But then I didn’t, I just withdrew completely and even so more than that later, and I would even send emails out to my friends and I’d say, Hey, I saw you called a couple of times this week. I can’t talk, but no, I love. And that was basically all I could say is I could not explain to them where I was. My mind was.

So was I don’t let me use the term warp that has a negative connotation in my mind. I was just, I was so confused. So I just shut down through the year. So I was able to open up, especially to the other special needs stand fathers. I met the few through the sand school and then eventually I wouldn’t say come out of it.

But I was able to rekindle some, some older relationships of people who had just shut out and it was no fault of theirs, but they had happy kids and we’re living the life of Riley. And I was, you know, in my own real or self created hell and I couldn’t relate to them, but I finally got comfortable enough where I was, where I could say hello and not be on the defensive and not have a chip on my shoulder or.

Wait for the wrong thing to be said. That makes sense.

David Hirsch: I think I remember you writing. How about Andrew situation is one of the first things that you couldn’t

Mark Maguire: fix? Yes. Yes. That was tell you David all, all my life. And I’ve not had a terrible life, but all my life, I was always able to fix things. We moved around a lot.

I learned basketball. And I wasn’t a great natural athlete, but I learned it. So wherever we move to the basketball was my passport. I can make friends, I could, I could overcome issues by practicing on my shots and getting up every morning and every night making teams and things of that nature. I was in college and had to get my GPA up, certain things I could, I could out study anybody.

Wasn’t the smartest, but I could outwork when I got into my job, I could outwork this or out, create this, or Mmm. If the crown was bad in the garden, I could dig it up until it rates them. But, you know, with Andrew, it was the first time where I said, I, I can’t, and it really, it kicked me in the stomach for the first several years.

I did everything I could within my power. To help. Yeah. You know, if it was doing some extra freelance work for some or some money or, uh, we moved, um, you know, an hour away from my job, which I don’t regret it. So he could go to a special school. I did all the little things I could, but at the beginning it was a real shock that I couldn’t fix it.

And it just, I talked to you earlier about how I spent a lot of that first year in shock, and that was part of it. It was just, I was going to move somewhere and get extra cells or cellular therapy or this no, it is what it is. So that was a, a real struggle and a real struggle of acceptance as well.

David Hirsch: Yeah.

Very powerful. Thanks. Thanks again for sharing. Um, I think I remember you writing about bitterness and bitterness being a soul killer. Can you expand on that?

Mark Maguire: Yes. And that’s something I still wrestle with and be candid and not every day, but more than I’d like to. I think it’s, it’s so easy sometimes, especially as your child grows older, you know, there’s, unjustness in the world.

There always has been, there always will be it’s in Daoism, it’s in the new test, the minutes and, you know, Proverbs, but. When you see people who have not done the right thing, or who’ve made bad choices or who, or just driven by greed or materialism, and they have a perfect life, or at least it looks perfect.

You know, they don’t have the financial responsibilities or they don’t have the issue of having a special needs child and their biggest complaint. And this is what got me in this. Might’ve been why I wrote that blog was I had a young lady who worked for me and she came up. Oh, I’m so sorry. She came back to the office and I’m so sorry.

We were in Italy for three weeks and I’m just exhausted. I’m sorry. I missed that deadline. And in my head, I’m thinking very bad words. And then thinking you missed a deadline cause you’re tired from Italy. I would trade anything for my wife and I to go away for two nights. And then I would come back and make the dag gum deadline because I want to get paid.

And it was that real sense of anger and I guess justice, but I had to check myself and say, Mark, you’re just getting better, man. You cannot hold on to this because every other person you meet is going to have. Stories like this, and it’s having the same where I work now with people I run into now, you know, everybody everybody’s fighting a battle and everybody has a certain type of disability.

But when you see people who you’ll have so much, and the things they find a complaint about, it really makes you want to just dismiss the lot of humanity. Because, I mean, mentally, I want to say your, your school, Brett, you don’t know what real pain is and then have to go, Whoa, Whoa. That’s not what Christ would say.

That’s not what you’d want your child to say stop it. You know? And my little internal dialogue, you know, do some prayer, you know, go get some exercise, get those endorphins up. And I apologize if I’m being too candid there, but it’s. You know, bitterness just wrapped your soul to a, into a bad place where it’s cold and it shut off and anger and it just it’ll eat you alive.

And at the end you won’t have anything left, but you and your bitterness. So that’s something I, I continue to struggle with some days better than others and something I’m working

David Hirsch: on. Yeah, well, it sounds like, um, you’ve wrestled with this issue for years and years

Mark Maguire: and years,

David Hirsch: and it gets triggered by incidences, whether they’re work or community or family related.

And that, uh, one of the things that stands out in my mind and we hear it, everybody hears it, you know, um, about somebody who’s being aggrieved. And, uh, it seems like the more public you are. About things, the more attention you’re able to draw to it. And you just wish you could just dial it down, like tone, it counted out, right?

Because you know, a lot of the things that people get all jazzed up about or are focused on are not the important thing, right. At a core level, not the important things. And I think that’s one of the big takeaways for people in the special needs community. Is that. There’s less of a tendency to take things for granted, right?

Because you realize there’s certain things out of your control anybody’s control, and you need to figure out how to live with that and make the most of it, not just to survive, but if you can figure out how to thrive in the situation, again, much easier to talk about super difficult to, you know, practice or implement on a ongoing basis.

So again, thank you for your. Authenticity and the clarity of your thoughts. So what role has spirituality played in your lives, yours and Jamie and your family for that matter

Mark Maguire: that I could, I could probably talk about for three days and I really want it want to hear myself talk about it for more than three minutes.

Um, but it’s growing up in the church. I grew up in that environment when my dad. Stop preaching. I went through a lot of anger and bitterness. Um, and then in a nutshell, I was an atheist for a good three or four years, and then to the Eastern religions, which that science led me back to Christianity, uh, for the long version, which people always laugh and go science led you to Christiania says long story, but go study photosynthesis and tell me those 36 major steps are.

Or chance, and then we’ll have another conversation, you know, faith and spirituality. It plays a big deal. My wife has a very strong faith and I respect her so much for that. I have a weak faith. She says, I need to stop saying that because you know, then you turn into the thing you pretend to be, or, you know, it’s C S Lewis said something to that effect about being Christian.

You act like one, eventually you will be one, but I do. My fate. I wrote a series on the blog about this called the apologetics intellectually. I tend to come at it more from Pascal’s wager no limits live as if you know Christianity is true. Cause it’s, it’s a gamble. It’s a wager I won’t get into the weeds on that philosophically, but that’s kind of my intellectual, but, but I’ll tell you one thing that has really fostered my faith since Andrew was born.

Was when you see so many good people doing things for no reward, like the special Olympics, like the challenge. And I, I told a friend of mine and he’s a special needs dad. He’s he’s very agnostic. I said, let me tell you, brother. I said, I said, as, as one philosopher said, God, is that right? I said, but it’s people aren’t think about that.

My bad. I mean, We can say what we want about theology and God and spirituality. But when you find me someone who’s willing on a Sunday morning or Saturday afternoon, they give up their time for no reward to spend time with special needs children or adults. I can’t chalk that up to anything else. That’s God they’re doing it for the right reasons.

And when I see God’s actions through people like that, that’s what touches me. That’s what changes. And I might be going a little sideways here on the answer, but it’s when I see that that plays a role in my life that restores my faith. And I wouldn’t say my faith in humanity, but my faith in my faith and okay.

That’s, that’s very important. Right? A lot of the other things I do, I go to church and I try not to criticize mentally because I’m a preacher son and we’ve heard all the sermons and it’s hard for us not to, I try to do that a role model for Patrick. Um, and we pray a lot. I pray every morning and every night and any times through the day.

Um, so faith and spirituality, it’s, it’s very important part of our life and our marriage and our family. Just kind of like we were talking about earlier. I don’t wear it on my sleeve. It’s not that I’m ashamed of how I believe, but I’ve seen so many hypocrites and I know I’m going to fall. I know I’m going to say the wrong thing.

I know I’m going to make a blanket. So, so I’d rather live by example than live by words. I hope that answers your question, David. I kind of went off the rails there for a little bit.

David Hirsch: Oh, no, no. I was following along, um, very powerful. And, uh, you know, when you’re confronted with overwhelming situations, you know, what, what do you have to hold on to, uh, one of the other dads in the network, a rabbi out in LA Bradley arts, and, you know, said atheists must be some of the strongest people in the world because without God, how do they deal with the other challenges like we all have?

And, uh, I thought that was a very profound statement as well. So I’m thinking about advice now, what are some of the more important takeaways that come to mind regarding raising a child with differences?

Mark Maguire: You know, I would, number one, I always say, hold fast, don’t give up the ship and that’s so simplistic.

Some days you just need to hear it in their old fast. Don’t give up the ship. As I’ve seen a lot of folks do that, whether it’s to. Drugs and alcohol are the tapping out on their marriage or pouring themselves into their work, stick with it. The other thing I’d say is 15 minutes at a time, they get 15 minutes at a time and get through that.

Another one, you got to find an outlet and it doesn’t have to be anything popular. It doesn’t have to be golfing or, or square dancing. It can be woodwork or playing guitar or art, or, you know, anything like that, but fine, something that you can do that has no relation to you, just being a special needs debt.

Cause you pour so much of your energy into that, that you need to find something outside of that where you can have an outlet. And then also physical outlet. So if you tell like a lot of anger, like I did and still do at times, you can get that aggression out and get those endorphins. And then I would say finally, if you can find someone you can talk to that’ll make a huge difference.

I mentioned my friend. Adam earlier. And he lives in North Carolina now. And he was, he was the one person I was able to talk to. And I think it was cause he really just listened. That’s no offense to my other friends, but yeah,  just listened and nodded. So I would say those are the kind of the four or five main things just to get you through to get you through each day.

David Hirsch: Pearls of wisdom. Uh, hold fast. Don’t give up the ship 15 minutes at a time, finding outlet, something that is going to allow you to take some of the pressure off, um, doing something physical, uh, perhaps, uh, also dispersing some of the energy that can work against you and then, um, being in community, uh, with somebody else or somebody else.

Uh, who can relate to what’s going on in your life. Very powerful. Thank you again. So, um, under the banner of advice still, is there any advice you can share with dads or parents for that matter about helping a child with disabilities reach their full potential?

Mark Maguire: I think you’ve just got to try everything you can, and that’s a blanket answer, but it goes back into don’t give up the ship.

I mean, You’ve got to try everything you can, because you just don’t know. At the end of the day, at the end of the year, at the end of 10 years, you could say, well, maybe we should have tried this or this. No, try it, try it all. You know, it’s better to try and fail than to not try at all, go for it, do everything you can and then push them.

That’s something we learned from. Our friend at the Sam school and, um, mentioned them. I swear, I’m not doing an advertorial for them, but they said, they said, you’ve got to push these kids. And we’re that way with Andrew, when he was in a Walker, I would, I would push him. I’d make them walk farther than he thought he could.

He started walking out, Hey, we’re going, we’re going just, you know, 20 steps and I’d take him. And I just say that it’s not out sadistic. But it’s that way with all of us, you set the bar low enough people reach it, you set it high enough. They probably will too. So your kid may have hypertonia, but that doesn’t mean you need to coddle them all day, keep them inside, get them outside, wrestle with them, push them to walk more.

Try them in some social situations, if they have challenges with noise, but earphones on them. If that doesn’t work trauma in a smaller situation. Try the different medicines, you know, nobody wants to medicate a kid. Nobody does, but you’ve got to try certain things. And one thing I realized was we may not like it having to give our kid appeal, but they may need that pill.

It may make them happier if they deal with anxiety. So I think, you know, you’ve just got to try everything possible, even if it sounds crazy, you know, within reason. The short fight for your Medicaid fight for your therapy and don’t limit them because they will surprise you.

David Hirsch: Yeah. Well, if I could paraphrase what you’ve said, uh, don’t look back and say, coulda woulda showed up.

So err, on the side of find the different things and then have high expectations, right? Yes. That’s better than trying to do everything for your kids, whether they’re typical or not, for that matter. And, um, it takes a certain discipline on a parent’s part because sometimes you’re in a hurry and it would be a lot more efficient to just do something as opposed to take the extra time.

Even though it might be minutes when you feel like you’re under some pressure, but that’s going to lead to something on a longer term basis, you know, a greater achievement on the child’s part. So why is it that you’ve agreed to be a mentor as part of the Special Fathers Network?

Mark Maguire: You know, it’s, there’s a book probably on right now called the wounded healer.

And for those who may not know a lot about now, in a nutshell, he was a world renowned theologian who one day basically said, it’s great. I’m preaching all this, but I need to live it. He went and worked at lay arch, a community for special needs adults. But in his book, the wounded healer, he talks about you don’t have to be perfect to help others.

You can have your pain, but through your pain is how you can help others. It’s more about relating and being dark magic. And by reading that I was able to overcome a lot of my own insecurity. I’m not good enough to help him, or I’m not smart enough, or I’m not spiritually pure enough. And then where I’m going with that.

It’s I, I got the feeling it’s not all about being perfect or good. It’s about being real and what wouldn’t. I have done to have somebody to help me when I was a new father to special, just somebody to listen. And then if someone gave me advice, I would know it wasn’t just platitudes. You know, that it was real.

So I just hope in my own small way that I could, you know, give somebody a helping hand on the way. Just try to try to help them to stick out the journey.

David Hirsch: Yeah. Well, we’re very fortunate to have you as part of the network and thank you for your thoughtful insights. Is there anything else you’d like to say before we wrap up?

Mark Maguire: No, I would, you know, if anybody wants to follow the blog special needs, stay chronicles.com. We have a Facebook page to work. Occasionally I’ll post things for advocacy, or I have people who guest posts if you want to guest post doc. And I just want to thank David for this opportunity and for all the work you’re doing.

And just tell everybody out there, hang in there and hold fast. Yup.

David Hirsch: Well, very powerful message. So if somebody wants to get a copy of the confessions of a special needs dad, or to contact you. How would you suggest they go about doing that?

Mark Maguire: Yes. Confessions of a special needs stay at it’s available on Amazon.

And if you want to contact me, you can just email me at dad at special needs, dead chronicles.com. And just for what it’s worth. If you get on the website or you see the book and it doesn’t have my name, I did write it initially quasi anonymously, but, um, you can also find me. Too, just by Googling or, or whatnot, the debt especial needs that chronicles.com.

David Hirsch: Excellent. Mark. Thank you for taking the time. And many insights as reminder. Mark is just one of the dads. Who’s agreed to be a mentor father as part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own.

Please go to 21stcenturydads.org, Mark. Thanks again.

Mark Maguire: Thank you. Have a good day.

Tom Couch: And thank you for listening to this dad to dad, podcast, fathers, mentoring, fathers of kids with special needs 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: And again, to find out more about the Special Father’s Network, go to 21stcenturydads.org, 21stcentury ads.org. Thanks for listening.