265 – Krista Mason of Holland, MI Founder Of Benjamin’s Hope Named After Son Benjamin, Who Is Autistic

Transcript:

Tom Couch: Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast, working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at HorizonTherapeutics.com.

Krista Mason: I felt in those middle years, like we were always inadequate in what we were providing both the boys. There just wasn’t enough. There wasn’t enough. There wasn’t enough. And now James is able to say it was enough. And actually it was good. It was hard, but he’s gracious and commending of our parenting. So I think an encouragement perhaps to parents that are earlier on in this journey is just staying in the game means more than you think it does, even though you’re not getting all the things right that you would wish to if life was different.

Tom Couch: That’s our guest this week, Krista Mason, the mother of Benjamin who is autistic, and the co-founder of Benjamin’s Hope, a live, learn, play, worship farmstead community where people of all abilities are transformed by the love of Christ. We’ll hear the story of Benjamin’s Hope and more on this Special Fathers Network Dad to Dad Podcast. Now here’s our host and the founder of the Special Fathers Network, David Hirsch.

David Hirsch: Hi, and thanks for listening to this Special Fathers Network Dad to Dad Podcast presented by the Special Fathers Network, a dad to dad mentoring program for fathers raising children with special needs. Thank you to those who supported the 21st Century Dads Dads Honor Ride 2023 campaign, which was a 3000+ mile bicycle race from Oceanside, California to Annapolis, Maryland. I was one of the four racers and it took us seven days, 19 hours, and 10 minutes to go from coast to coast. Special thanks to the following donors for contributing $1,000 or more. In alphabetical order, they are: Ina Burd, Kim Duchossois, Jim Duran, Chaz Ebert, John Guido, Horizon Therapeutics, Scott Marcotte, Damien Navarro, Dick Reck, Barbara and Glen Reed, Rotary Club of Chicago, Warren Rustand, Don Stadler, Nick Topicha-Dolny, and UBS Financial Services. If you’ve not already contributed, please do so by visiting 21stCenturyDads.org. Your tax-deductible contribution will help keep our programs free to all concerned. I would really appreciate your support.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. To find out more, go to 21stCenturyDads.org. So now let’s hear this fascinating conversation between Krista Mason and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Krista Mason of Holland, Michigan, the mother of two, as well as executive director and co-founder of Benjamin’s Hope, named after her son Benjamin, who has autism and developmental delays. Krista, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Krista Mason: Oh, it’s my pleasure. Thank you, David. Yeah.

David Hirsch: You and your husband, David, have been married for 32 years and are the proud parents of two boys: James 29 and Benjamin 27, who has autism and developmental delays. Let’s start with some background. Where did you grow up? Tell me something about your family.

Krista Mason: Oh, okay. I grew up in Columbus, Ohio, and was very fortunate to have two wonderful parents, a stable home life, and actually of interest had, I think, almost no exposure to anyone in my school life or my home life who was affected by disability. So I live now, as you said, in Holland, Michigan. So being a Buckeye – hah! – here in Holland, Michigan isn’t probably a thing to be celebrated.

David Hirsch: Is that Spartan territory?

Krista Mason: Oh yeah.

David Hirsch: Or The Big House territory?

Krista Mason: Both actually, it depends. Yeah. Both. But it’s not Buckeye territory. [laughing]

David Hirsch: Absolutely. So out of curiosity, did you have siblings when you were growing up?

Krista Mason: I did. I have one younger sister. She’s about four years younger than I am.

David Hirsch: Excellent. And out of curiosity, what did your dad do for a living?

Krista Mason: So I love that you’re asking about my dad. My dad was in the insurance industry and quite an innovator in his space, and unfortunately he passed away about 32 years ago, so I was only in my late twenties when I lost him. But my dad was, I think, unique probably in that time, in the ’70s, late ’70s, in that he really challenged me to think. He was less concerned with did I agree with his opinions? But he really challenged me to think. People ask sometimes, where’d you get that kind of entrepreneurial innovator spirit? And I really credit my dad in a lot of ways because he wanted to see my brain working.

David Hirsch: Yeah. That’s fabulous. Thanks for sharing. And how would you characterize your relationship with your dad?

Krista Mason: We were very, very close. The loss of my father to this day was the most profound experience of grief that I’ve ever had. And it’s now 32 years later, he hasn’t been able to see the way that God’s really used… He actually didn’t meet my children, so he never got to be a grandpa, and he didn’t get to go through the experience of Ben’s diagnosis and then ultimately what God did that was beautifully redemptive through Ben’s autism.

David Hirsch: Yeah. Thanks for sharing. He did die at a very early age.

Krista Mason: Yeah.

David Hirsch: It’s obvious just from the way you talk about him that he had an influence on your life and the way you do things. And it’s unfortunate that he didn’t get to see part of the legacy that he left, but it’s there.

Krista Mason: Yeah. I feel though remarkably – I guess this is a wonderful thing to share with fathers – his influence. To this day, I think often about what would my dad think about this? How would my dad move through this? So beautiful to see that decades later we still influence our children.

David Hirsch: Absolutely. And thinking about that, is there a takeaway that comes to mind, perhaps the way that you parented, that you can identify that was influenced by your dad?

Krista Mason: I would say yes. I think my father presumed competence in me probably before I earned it. I remember having an economics class my freshman year in college, and I was so excited about what I was learning that I wrote him. This was before we were emailing on a regular basis, right? So I wrote him this big, long letter about what I now understood about supply and demand. And I’m sure for my father it was 101 information. But I think he was so delighted to see me being excited about learning, and I hope that I’ve perhaps instilled that in my boys in some way, too.

David Hirsch: That’s fabulous. Thanks for sharing. So I’m thinking about other father influencers, and I’m wondering what if any influence your grandfathers had first on your dad’s side and then on your mom’s side.

Krista Mason: Both my grandfathers died when I was quite young, but I can talk about the influence that my father-in-law had. My husband, Dave, grew up here in Michigan so he’s more popular here than I am. [both laughing] But his father, we lost him actually just about a year and a half ago. He was a powerful influence in my life in that he was a challenger. This early idea, which we’ll talk about later I’m sure, of a farmstead community for adults with autism. One of the very first people that I shared it with was my father-in-law, and long before I understood that my son Ben would need this level of support. And then some years later, he was the one that really nudged me in a very directive way that I didn’t appreciate at the moment, but was really influential I think, in helping me understand that it’s time for me and my husband to take the initiative to get started.

David Hirsch: Thanks for giving a shout out to Papa Mason.

Krista Mason: Yes. And that’s what we, that’s what my kids called him was Papa. Yeah.

David Hirsch: Okay. Yeah. That’s what I’m known to my two young grandchildren as is Papa.

Krista Mason: Ah!

David Hirsch: So I think what you get labeled from the very beginning is what you’re known as for the rest of your life.

Krista Mason: And isn’t that a good thing usually? [laughing] Yeah. Right.

David Hirsch: Well, thanks for sharing. Thank God for Papa Mason.

Krista Mason: Yes.

David Hirsch: So my recollection was that you took a BA in business and psychology from Miami of Ohio. And I’m wondering where did your career take you?

Krista Mason: It’s interesting because when I was in college, I’m certain that I had no idea of going into nonprofit work. No one in my family had been in the nonprofit space. It was just not familiar to me. So out of college, I took a job in pharmaceutical sales. I sold drugs. [both laughing] That’s a noble thing, right?

David Hirsch: We have a joke in our family ’cause our oldest son works for Coca-Cola and we jokingly tongue-in-cheek call him the Coke dealer.

Krista Mason: Ah!

David Hirsch: Which is selling drugs like you were talking about.

Krista Mason: Yeah. Yeah. So that’s what I did for a number of years. Then when our first child, James, was on his way we had just bought our first house and we bought it based on both of our earnings. Not thinking forward particularly. And James was on his way and I spent most of my time traveling and it occurred to us that this really isn’t gonna help our family thrive. So we made the decision at that point that I wanted to stay home with the kids for a number of years and we couldn’t afford our house without my income. So we sold that house and bought a little fixer upper. And I had the privilege of, for about 10 years, being home full-time with the kids.

David Hirsch: Thanks for sharing. So if I can recap, you were responsible, right? You had a bigger house or maybe a bigger mortgage than you might have been able to afford on one salary.

Krista Mason: Yep.

David Hirsch: And you downsized. And you lived within your means so that you could be more family-centric. That’s what I heard you say. And you were a stay-at-home mom for about 10 years.

Krista Mason: Yeah.

David Hirsch: And out of curiosity, how did the two of you meet?

Krista Mason: Yeah, we both went to Miami of Ohio for undergrad and met our senior year. I admired Dave from afar and then started dating right before graduation. And Dave was heading off that next fall to law school and we ended up getting married between his second and third year of law school.

David Hirsch: Okay. So you’re college sweethearts, is that accurate?

Krista Mason: Well, the last three days of college, but you can call us that.

David Hirsch: Okay.

Krista Mason: [chuckling] If you happen to know Miami of Ohio, if two Miami grads marry, you get Miami Merger Valentine’s Day cards every year, and we get one. So I think we count.

David Hirsch: Okay. Thanks for sharing. I love it. So let’s talk about special needs on a personal level and then beyond. I think you said earlier that before Benjamin’s diagnosis that you or David didn’t have any connection to the special needs community. Is that accurate?

Krista Mason: That’s correct. Yeah.

David Hirsch: What is his diagnosis and how did it come about?

Krista Mason: Ben was typically developing for about 16 to 17 months of his life. He was gaining language. He had probably about a dozen words, and he was impy and mischievous and interactive. And between the ages of 16 months and I’d say 19 months, he went through what, in hindsight, was a very, very rapid regression. Of course when you’re in it, you don’t always perceive it in that way. But during that time, he had chronic ear infections, lost his language. I remember a day that he was in his little highchair and I had put that big tray on in front of him and I was doing this little dance and song thing, I wouldn’t do it for you. It was, I’m sure, embarrassing. But it was just a routine that we had that always made him just squeal with laughter. And I’m doing my little dance and singing and he was… it was as though he was looking through me, beyond me. Just, no, no reaction. He just folded inward and there was no way to connect with him.

We were in the process as most families, we went to our pediatrician. You get referred to the specialists, and by the time it was actually his second birthday it was 1999. And we were to see the doctor at Ohio State University who had led this series of evaluations. And I remember on that day thinking we’re gonna learn a bit of information that’s gonna define what life is gonna be. And we went to this appointment, we were sitting in front of this doctor’s big, huge wooden desk and he walks in and not long on bedside manner, he sits down very directly and looks at Dave and I. Ben’s playing with his little Thomas the Tank engine trains down at my feet. And he looks at me and says, your son has autism and time is not your friend.

David Hirsch: Wow!

Krista Mason: I know. And I remember feeling that in the speaking of that word, he erased everything that I thought I knew about Ben and being Ben’s mother and what might his future look like. And he just had this huge eraser and he just erased it and replaced it with a word that frightened me.

David Hirsch: Did you know what autism was at the time?

Krista Mason: I did. Interestingly, and providentially I believe, probably a year earlier, we had neighbors move in a couple doors down from us and they had a sixth grade son with autism. So I knew Julian. Julian would be in and out of our home. And we were becoming close friends with the family. So I knew one person with autism.

David Hirsch: And if you know one person with autism, you know one person with autism.

Krista Mason: You know one person with autism! Exactly. Right. So that was a jarring meeting for us. And what I do appreciate, as I reflect back on that, he wanted to help us move quickly to understanding the importance of early intervention. And so he said, time is not your friend. And we said, what would you do if this was your son? And he said I’d move to New Jersey.

David Hirsch: Oh my gosh!

Krista Mason: I know! Well, this is the late ’90s. At that time autism was not a household word. And the research centers of the country tended to be on the coasts, and educational services in those areas were much more advanced than they were in the Midwest. So Dave and I went home that night and we made a list of all the pros and cons of trying to move to New Jersey. And we had no connections, we knew no one in New Jersey. Dave wasn’t licensed to practice law in New Jersey. That’s a big deal. And my mom had lost my dad a few years earlier. Everything was in Columbus, right? So there was this big long list of staying in Columbus, and then nothing on the New Jersey side. [laughing] So, we really saturated ourselves in the research and within three months we had a 40-hour a week applied behavior analysis program running in our home in Columbus.

David Hirsch: Wow.

Krista Mason: Yeah.

David Hirsch: What I heard you say was you took the Ben Franklin approach, which is to make two columns, list the benefits or pros of each. And then, sometimes it helps you to visualize.

Krista Mason: It does, yes!

David Hirsch: You get it off your mind and put it on paper so that you can see, how does this sort of weigh out? What are the pros and cons, if you will. And there wasn’t any reason to think otherwise, that you were not moving to New Jersey.

Krista Mason: There was nothing in the New Jersey column at the time other than that doctor’s comment.

David Hirsch: That was the beginning of your journey.

Krista Mason: It was, yeah.

David Hirsch: And was there any meaningful advice that you got early on that you can look back and say, yeah, if it wasn’t for that, we wouldn’t be where we are, or something that’s pivotal that comes to mind?

Krista Mason: Yeah. In fact, when that doctor very bluntly said, you don’t have time to sit around feeling sorry for yourself because you got a diagnosis for your son. Time is not your friend. Jarring as that was. As we were leaving, he looked at me and looked in my eyes and he said, this is still your Ben. I think as frightened as I was about what was unknown about the future, I think he had great wisdom in reminding me that this is your boy that you love and you are the right parents for him. I think there was that balance of hard truth that was necessary as an impetus. But then also the restorative word of our children are known and loved by us, and even when we don’t have all the answers and we don’t know what the next steps are, that’s the most important thing.

David Hirsch: Yeah. I can only imagine what it must’ve felt like to be the parents that you just described. Getting this diagnosis and taking the medicine, if you will, as bitter as that might’ve tasted. But also sort of getting a pat on the head and saying, this is your situation, right?

Krista Mason: Yeah!

David Hirsch: It’s gonna be okay.

Krista Mason: You can do this. Yep.

David Hirsch: Wow. So when you look back, were there some important decisions that you’ve made along the way raising a child with autism and developmental delays?

Krista Mason: Yes. I think decisions and then just God’s goodness to go ahead of us in things. As I said, we started a very intensive early intervention program in our home. Ben was making really wonderful progress in the first year and a half, I would say. So we started to regain a little bit of language. We were encouraged. And then Ben, probably just shy of turning four, Dave came home from work one day and he had a bottle of wine in his hand. It was the day of his annual review. And you know how you’re always a little bit nervous about what’s that gonna be? And so he walks in with a bottle of wine, which wasn’t customary. That was kind of nice. Puts it down. He said let’s get the boys down. So I put the boys down. He said, you better sit. And he probably poured me a glass of wine. He said, they want me to take a position in New Jersey.

David Hirsch: Oh my God!

Krista Mason: HAH! [slaps hands together]

David Hirsch: What are the odds? You can’t make that up.

Krista Mason: You can’t make it up. You can’t make it up. So within a couple months, we moved and resettled in New Jersey. Yeah. I think our story is one of doing the things you can do, pour into the research, make the decisions, be bold with that around things that seem to have promise and hope and good practice for your loved one, but be on your knees because God is already ahead of you in this. And neither one of us had any idea that there would be a request to take a position in New Jersey. What a remarkable provision that was! So we moved. [laughing]

David Hirsch: That’s amazing. Yeah. How long were you actually in New Jersey then?

Krista Mason: So I think just shy of eight years. Then we moved to New Jersey. Now Ben’s four, four and a half. And one day I… it’s the only time it’s happened in my life. I had a picture in my mind’s eye, as clear as a photograph, of a farmstead community where adults with autism would live and thrive and have belonging. It would be a faith-centered community. I saw it so clearly. And I shared that idea with my father-in-law. And he said that sounds like a good idea, Krista. And I said it does, but we won’t need that because Ben’s having this big intensive early intervention and he’s gonna come out of autism. But that would be a good thing for somebody to do.

David Hirsch: How prophetic. Yeah.

Krista Mason: I know. I know. And then, five, six years passed. By that time, Ben is my size, which isn’t saying much. I’m five-one. But his progress had greatly plateaued and he was struggling with rage and aggression. As a not traditionally verbal person, he didn’t have language. He was struggling. We were struggling. Oh, it was just a time of trying to keep our heads above water. And my father-in-law said to me, Krista, where are you with the idea for the farm?

David Hirsch: Wow.

Krista Mason: He didn’t forget it. I think I had far pushed it to the back. I was so angry with him at the moment because it was a truth in love statement. He was holding the mirror in front of me to say, short of God doing a miracle, Ben is not coming out of autism and it’s time for you to get started.

David Hirsch: Wow. We’re gonna go there in a minute, but I just want to focus on what you’d said. This is sort of a dark chapter, if I can call it that, with the rage and aggression that you were referring to.

Krista Mason: Yeah.

David Hirsch: And I’m wondering, not to focus on the negative, but what were some of the biggest challenges that you and David faced in that time or over that period of time?

Krista Mason: So many. I think for families who have a loved one with profound autism… Some people use the term severe autism; I have mixed feelings about that. You’re just trying to get through a day. And we had our son James, who was two years older. And the disparity of attention that we had for James because Ben, and he didn’t choose this, but he demanded everything and more than what we had. And so I think you’re in the midst of that recognizing that your other son, your other child, is getting scraps.

David Hirsch: That sounds very challenging, that issue of family balance.

Krista Mason: Yeah.

David Hirsch: Because your resources are being stretched and you have this vision that I should be parenting each of my children in a similar way with a similar commitment, similar amount of time and resources. And that gets blown out of the water.

Krista Mason: Yep.

David Hirsch: So what is it that you did to compensate, when you had that awareness?

Krista Mason: Dave and I think one of the things we’ve done very well in our marriage is a little bit of a divide and conquer strategy. It’s served us well. We’re still married. That’s a good thing. Also, I think, it is a thing that, how do you maintain connectedness and cohesiveness as a couple when life is necessitating that you’re always dividing and conquering? But I think we’re both quite pragmatic and able to really navigate that in a way that kept us going. It’s been interesting to me over the years, even as my oldest son who’s just about to turn 30, is a therapist. That’s what he does for a living. And he works with adolescents that have all kinds of different challenges in life and their families. And it’s been quite interesting to hear him process, his looking back on his childhood and our parenting during his childhood. He understandably, I think, felt the disparity of attention during many years of childhood. But now he can look back and really I think feel thankful that we were able to stay together. It was messy a lot of the time. Most of the time. All the time.

So I think here’s the reflection I’m getting to, being at the stage of parenting where both my boys are now firmly in their adult years. I felt in those middle years like we were always inadequate in what we were providing both the boys. There just wasn’t enough. There wasn’t enough. There wasn’t enough. And now James is able to say it was enough, and actually it was good. It was hard, but he’s gracious and commending of our parenting. So I think an encouragement perhaps to parents that are earlier on in this journey is just staying in the game means more than you think it does, even though you’re not getting all the things right that you would wish to if life was different.

David Hirsch: Yeah. Thanks for sharing. Thanks for your transparency, your authenticity. And what comes to mind is that there’s these expectations that we each have of the, what you were describing, the parents you anticipated being versus the parents that you became…

Krista Mason: Yeah.

David Hirsch: …just based on the circumstances. It is revealing though, to learn later in life, like you were just sharing from James’ perspective that it was good. It was okay.

Krista Mason: It was odd and different than all of his friends, but it was good.

David Hirsch: It seems, if I can read between the lines, that Ben’s had an impact on his older brother, your marriage and maybe the extended family. And one of the positive consequences is that perhaps it led to James’ career path.

Krista Mason: It did. It did.

David Hirsch: As a therapist, as somebody who can empathize with other people who find themselves in circumstances that they wouldn’t ask to be in.

Krista Mason: That’s right.

David Hirsch: But they’re there. And how do you go from the circumstance you find yourself in to where you are more desirable to be. And so he is eminently qualified because of his lived experience, right?

Krista Mason: He is, yeah. And he can speak with parents who are 20 years his senior with a level of insight that you wouldn’t typically have at his stage of life.

David Hirsch: Absolutely.

Krista Mason: And I think one of the great takeaways of life and the progression of life in our story is I wanted God to lift autism. And I know that’s a controversial statement. People, some would take great issue with that. But what I observed autism to be for Ben was excruciating. And how can you not want your child to not have pain, right? There’s no gentle edges to Ben’s autism. And God didn’t say yes to that prayer. And he had such a larger story in mind that is redemptive and impacts so many people, but it included Ben’s autism. That’s a central part of how God’s used his life in a redemptive way.

David Hirsch: Yeah. You raise a good point, which is if your child is undergoing some pain, as a parent you feel it’s your obligation to alleviate the pain, right? Remove the pain. That seems like the right thing. When you, I guess, accept the fact it is what it is… There’s this person-first language that we’ve all been instilled to use, which is the person has autism. And you would understand that it would, at least by some people’s way of communicating, you don’t refer to autistic Ben, it would be Ben with autism. And what I’ve learned more recently from adults in the autism community, and apparently the research suggests, that 80% of the adults with autism would prefer to be referred to as an autistic person.

Krista Mason: That’s right. There’s the identity-first language is moving toward the prevailing way of talking about this. And it’s interesting, I did an interview recently and I used person-first and I used-identity first. And after the interview, one of my coworkers said to me, did you do that on purpose? [David laughing] And I said, I did actually! Because I recognize that for a person who has autism themselves, identity-first language is honoring. And I wanna honor that. And there are other occurrences where person-first language is considered more honoring. So here’s where I am: I’ll just use them both [laughing] and hope that everybody understands that I just wanna speak in an honoring way.

David Hirsch: Yeah. I think your point is a good one, which is you just need to identify what somebody’s preference is.

Krista Mason: That’s right. What’s your preference?

David Hirsch: And then respect that.

Krista Mason: Right. Yep.

David Hirsch: And don’t be judgemental. If somebody says…

Krista Mason: It’s not mine to decide, right?

David Hirsch: Yeah, that’s right. But I think that what my enhanced understanding is as well is that autism is just part of who individuals are. It’s not something that should be erased or removed or something that somebody should be ashamed of. And some people think it’s a strength.

Krista Mason: Right.

David Hirsch: Because what is a weakness in some cases is a strength in other situations. Or people in my profession – I’m an investment advisor – talk about assets and liabilities. These are beneficial over here and these are not so beneficial over there. It’s just the yin and yang of it all.

Krista Mason: Yeah.

David Hirsch: So anyway, thank you for sharing and being so open about it. So I’m curious to know, in addition to the impact that Ben’s situation has had on his brother James, and on your marriage like you had made reference, what if any, impact has he had on your extended family?

Krista Mason: [chuckling] All holidays happen at our house, so everyone drives to us. [both laughing] I’m sure that’s a trivial one. But it is interesting. Creating environments where Ben can be successful kind of drives all activities and the things that happen in and around our family.

Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a Great Dad Coin. Thank you. Now back to the conversation.

Krista Mason: And I think, what I want for my family or people in my life or our community, is I want people to see Ben as a wonderful human being first. And yes, autism is a big part of who he is. But I think it’s breaking down that natural discomfort that we feel whenever we’re encountered with anything that’s unfamiliar to us and helping folks feel comfortable. So like Ben has cousins his own age who love and delight in him, and I think they are more accepting humans because of being in life with Ben.

David Hirsch: Yeah. Thanks for sharing. It sounds like he’s had a positive impact on a lot of people’s lives. And as you were describing everything being Mason-family-centric, the holidays and celebrations, had you ever considered phrasing this not Benjamin’s Hope, but Ben’s World?

Krista Mason: Hah hah hah! It is Ben’s world! We didn’t consider that. It’s funny because in the earliest days of the formation, it was actually called Benjamin’s House. Down the road we did a DBA because somebody used, in a strategic meeting, used the phrase “this is Benjamin’s hope.” And we went, oh that’s what it is! So that’s how the name emerged. In this day and age, many years later now, I don’t know if we would’ve settled on a name that also had Ben’s personal name in it, but nonetheless, it is what it is.

David Hirsch: Let’s use that as a way to segue into talking about Benjamin’s Hope which is a 501c3 not-for-profit organization started in 2007. And I’m wondering what is “Ben’s Hope way?”

Krista Mason: I’m glad that you asked about that, David. I think the most distinctive thing about Benjamin’s Hope is our culture and how that kind of permeates how we do life together here. We got into this habit of using the phrase “the Ben’s Hope way” years ago on my team. We have a staff of about 110 right now. And we would talk about the Ben’s Hope way as that’s our distinctive of what we value and how we wanna interact with people. And one day my board president said, define it. So we did! We workshopped it all together as an admin team and really fine tuned the words that we consider to be our DNA. So… The Ben’s Hope Way: Committed to loving God and others, we fiercely respect the dignity, intelligence, and value of all humans. We are creative, courageous, and committed to excellence. Through the love of Christ, we live the abundant life together.

David Hirsch: I love it. Thank you for sharing. We’ll put that in the show notes.

Krista Mason: Oh, good!

David Hirsch: Anybody who might be listening, jogging, driving, won’t have to stop and pull over and try to write it down. Thank you.

Krista Mason: Yeah. And the value of doing the hard work of putting words to this is this now becomes how we teach, how we train, when we need to do corrective action. It governs everything. Because we’ll dissect it. For example, ‘we respect the dignity.’ So we’re a very growth mindset organization. When speaking with a resident, a man or woman that lives here, or one of my colleagues is, and we fall into maybe a tone of voice that would be appropriate for a child, that’s not dignity based, right? So we have language for gently reminding one another that dignity based language means I speak with adults in a tone of voice that is appropriate for adults. There’s lots of nuance that can come out of these words that really govern and shape our culture and our way of interacting with one another and providing care.

David Hirsch: Yeah, what I heard, what I like is by defining who you are and how you do things there’s an accountability.

Krista Mason: Yes, there is. And also a way to celebrate people. Oh, can I tell you a story? Okay, so here’s an example. Like the presuming intelligence and presuming confidence…

David Hirsch: Which came from your dad.

Krista Mason: Yep. It did come from my dad, which I don’t know that I’ve fully connected until this interview. So thank you. [David laughing] Yep. Oh, make me cry. So here’s the story. So there’s a gentleman who lives here at Ben’s Hope and he has this uncanny ability to notice when a light bulb goes out. And we’ve got I don’t know how many light bulbs, thousands of light bulbs around campus. And he, I’ll call him Joe. He’s always the first one to notice that light bulb’s out. So he wanted to be part of the team of replacing light bulbs. And it happens that Joe has a very significant tremor and going up on a big tall ladder, maybe 20 feet up in the air, in a lofty ceiling would not be something he would choose to do because it wouldn’t be safe for him. So my facilities manager, this is years ago now, but he and Joe went together to the hardware store and they bought a big, long piece of that PVC, that plastic pipe, that fits a light bulb. And so now, when Joe notices the light bulb is out, he puts the light bulb in the little pipe and the facilities fellow goes up the ladder and they replace that together.

David Hirsch: I love it. Yeah.

Krista Mason: And is that an efficient way to replace a light bulb? Of course it’s not, but that’s not the value. The value isn’t efficiency. The value is the dignity of this man and the idea of co-laboring for the kingdom. So we use The Ben’s Hope Way as a how do we think creatively? That’s an example of thinking creatively to respect the dignity and gifting of this man. So that’s a real nuanced art form that I, we don’t always get it right, but we talk about it constantly. And I think what that translates into for the men and women who live here or participate in our programs, or come to The Church of Ben’s Hope, it translates into an absolutely beautiful level of regard for humanity.

David Hirsch: I love it. Thanks for sharing that story. And obviously getting an extension pole that was designed for replacing light bulbs 20 or 30 feet off the ground would probably be the most efficient thing. But I love what I hear you saying, which is like a win-win solution, right? And it’s all about inclusion and acceptance.

Krista Mason: It is and being creative to make it happen, right?

David Hirsch: Yep. As I understand your mission, the Benjamin’s Hope Way mission, it’s “live, learn, play, worship.” And I’m wondering if we can drill down on each of the aspects of this model which is also referred to as a “farm model.” So I’m not sure which came first. You made reference to that and your father-in-law holding up the mirror and saying, what about this Krista? So was it a farm model first, or did you come up with the “live, learn, play, worship” phraseology first? How did this evolve?

Krista Mason: So that farmstead idea was part of the initial early vision, which I truly just believe was from God. And farming, farm work on a farm, is a beautiful match for some people. What are all the things that make life wonderful for us? Having a place of belonging, purposeful and engaging work, a community where we’re accepted and valued, play, recreation, things that delight us. So all of that then led to the idea of “live, learn, play, worship.”

David Hirsch: I love it.

Krista Mason: Yep.

David Hirsch: So as I understand it, it’s a 52-acre campus in Holland, Michigan, and you offer semi-independent housing opportunities for adults with autism and other disabilities. And I’m wondering how many individuals actually live there or participate in the programs?

Krista Mason: So I’ll walk through each of the pillars if that’s good. So “live” refers to our residential services. So if you were to come onto our campus, and you can see some of this on our website, you’d turn in… There’s a beautiful post-and-beam farm, with alpacas out in a pasture. You wind back and there’s a really architecturally interesting community center fashioned after Herman Miller style. We’re in Michigan. You wind further back and then it’s a, it’s called Grace Circle, a drive that goes around with woods surrounding it and six beautiful farmhouse-style homes. Big front porches, really lovely inviting homes. So each of these homes is licensed individually as what we call in Michigan an adult foster care home. And language terminology varies state to state of course. But we are licensed in each of those homes to serve up to six individuals.

David Hirsch: Is there an expectation that you’re gonna continue to build more homes? Is there a waiting list, or how do you deal with the fact that the demand is higher than your capacity?

Krista Mason: The demand is vastly higher. Bring me back to that question, but I wanna touch on something else first. When the board looks at what are we called to do as an organization in our community, the residential services of course, are a piece of it, and it tends to be what people focus on. But we think about how do we steward what God has blessed us with here for the benefit of the most people that we can in our community. We also have a church plant under the 501c3 of Ben’s Hope that probably 400-500 people consider this their church home. On a Sunday night we probably have, I dunno, 120-150 at a time, but many, many people. And interestingly, many people who don’t have disability in their life. I know. Isn’t that neat?

David Hirsch: I love it. Yeah.

Krista Mason: They come, they’re invited and they come and they’re like, this is the kind of church I wanna be part of! Yeah. That’s a big part of our outreach. We also have Monday through Friday programming that people from the community attend. They don’t live here, but they come for two, three or five days a week. We also have a wonderful friendship ministry that happens on Thursday nights. I think last night we had almost 100 people here. And then we also offer Rapid Prompting Method, which is an instructive method that helps people who are not traditionally verbal learn to communicate through typing, and lots of students from the community that come for that.

All in all, we’ve probably got about 500 people coming for one or another program over the course of the week. The residential portion is our most expensive and intensive program, but really just one part of many outreach.

David Hirsch: Thanks for putting that in perspective. That it’s a component. And it’s a very important component, obviously for those 31 or up to 36 individuals. We’ve covered the “live” portion. How would you describe the “learn” portion?

Krista Mason: Yeah, so “learn” really refers to a couple of the programs I just touched on. One is “Next.” The question that I get all the time from families, especially as their loved one is approaching the end of their schooling career, is what’s next? And optimally employment is next, or higher education is next. When you’re having that conversation with a family whose loved one is perhaps not traditionally verbal, very profoundly affected, maybe has a high behavior profile, that end of school is a cliff. There’s I would say literal terror that is a common experience of, what’s life gonna be like now? So our programming that’s designed for the community is a whole person growth approach that is really designed to help the post-school age person have an opportunity to continue to grow and develop skills and have some regular rhythms and routine of learning that really help life remain full and wonderful. So that’s called “Next.” That’s a relatively new program. We launched it a year ago, actually a year ago this month, and designed really to focus on folks in the broader community.

And I would say the other real “learn” component is Rapid Prompting Method. We have invested in this heavily and have two certified instructors on our staff that trained under Soma, who is a woman who developed this method. I don’t know what else I get more excited about in terms of what we’re offering right now, but RPM. We have students who have been doing this for several years – so it’s not like an overnight thing – who have gone from having no effective verbal means of communication… of course, everything’s communication, but they didn’t have a way to get their thoughts out… who are now fully independently expressing thoughts that are remarkable through spelling. It’s super controversial. If you’re not familiar and you dig into it, people love it, people hate it. I look at it as it connects with dignity. It gives an opportunity for learning and growth. And I wholeheartedly believe in its efficacy because I have seen it with so many of our students at this point.

David Hirsch: So in addition to the living arrangements we talked about and the learning that we just talked about with Next and Rapid Prompting, a third component is “play.” Recreation. And I’m wondering what type of resources are there?

Krista Mason: That is somewhat organic and somewhat designed, I would say. We have a beautiful walking trail around the campus and of course the barns and the gardens. So because we really cultivate a culture of engagement, there’s just a lot of opportunity naturally for play and being outdoors and being active. And then we also cultivate it. We partner closely with Hope College – which is only a couple miles from here, a good bit with Grand Valley as well – around Club Connect and the activities that happen on a Thursday night. And then with great intentionality through The Church of Ben’s Hope, really work to pair all-abilities friendships. And this was an effort that we did through the summer last year, and many of those friendships have really blossomed. They’re not meant to be prescribed, like we don’t say go to a ball game. But we let people, through their natural shared interests, really grow in opportunities to do stuff, here at Ben’s Hope and out in the broad community.

David Hirsch: So I’m thinking about advice now and I’m wondering specifically what advice you can offer a parent, maybe specifically dads, who find themselves at maybe an earlier part in the journey raising a child with autism or different disabilities for that matter.

Krista Mason: Yeah. Yeah. I had a conversation with Dave, my husband, about this. And his early experience around Ben’s diagnosis and mine was different. We’re two different humans, of course. But I think he would be comfortable with me saying, and I think a lot of fathers do experience the loss and the grief of a diagnosis sometimes in a different way than mothers. Great generalization, right? There’s obviously no one way. I think that the things that you perhaps envision as a dad, that your son or your daughter is gonna do or you’re gonna do together, there is grief associated with that diagnosis.

I think my word of encouragement, now 25 years beyond that diagnosis is, it may indeed look nothing like what you thought it would look like as a young parent, and that doesn’t mean that it’s not going to delight you and be beautiful and extraordinary. I look at Ben’s life now, as he’s a 27 year old man, who he is and the impact that he’s having, and I can’t fathom it any other way. And I would imagine if he could express inwards, he might say the same thing. And I look at what I want for James and Ben, my two boys. I want them to have purpose and belonging and friendship and acceptance. And they both have that, but it looks very different one to the other.

I guess to boil it down, while the future may indeed not prescriptively look the way that we imagined, be open to the possibility that God will do something beautiful and beyond through your child’s disability.

David Hirsch: Yeah. That is so eloquently and beautifully stated. Thank you. So is there anything else you’d like to say before we wrap up?

Krista Mason: Stay in the game. [both laughing] Yeah. I think to couples, if you happen to be married, grace toward one another and do the best that you can and trust God to let that be enough. For single parents that are doing this on the their own, reach out and find people to be with you in this. And to children and adults with a diagnosis of disability, be celebrated. Who you are is beautiful and wonderful and full of hope, and that’s a good thing.

David Hirsch: Absolutely. Let’s give a special shout out to Rick Bole of All Abilities Church in Naperville, Illinois for helping connect us.

Krista Mason: Yep. Thanks, Rick!

David Hirsch: So if somebody wants to learn about Benjamin’s Hope or contact you what’s the best way to do that?

Krista Mason: Go to our website, BenjaminsHope.net. You can also follow us on Facebook.

David Hirsch: I’ll be sure to include those in the show notes so it’ll make it as easy as possible for somebody to follow up.

Krista Mason: Great.

David Hirsch: Krista, thank you for your time and many insights. As a reminder, Krista is just one of the advocates who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father, or are seeking advice from a mentor father with a similar situation to your own, please go to 21stCenturyDads.org.

Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501c3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax-deductible contribution? I would really appreciate your support. Krista, thanks again.

Krista Mason: Thank you.

Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. 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 would be honored to have you join our closed Facebook group. Please go to Facebook.com, groups, and search “dad to dad.” Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@21stCenturyDads.org.

Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch.

Thanks again to Horizon Therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly, to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at HorizonTherapeutics.com.