377 – Jim Littlefield-Dalmares of Louisville, KY Father Of A Child with CP, Author, Podcast Host & Founder of Seeing Ability

Transcript:

Tom Couch: Special thanks to Amgen for sponsoring the Special Fathers Network Dad to Dad podcast, committed to unlocking the potential of biology for patients suffering from serious illnesses by discovering, developing, manufacturing and delivering innovative human therapeutics. Discover more about Amgen’s mission at Amgen.com.

Jim Littlefield: I think even the word disability is kind of negative when you think about it. It’s like they have the lack of ability, disability. We all have disabilities, whether you’re shy or whether you can’t play basketball or whether you can’t sing. We all have limitations, but we’re usually not defined by them. We have an incredible amount of capabilities in addition to our diminished abilities.

Tom Couch: That’s our guest this week, Jim Littlefield-Dalmares. Jim is the Director of Market Development at BNI in Littlefield, Tennessee, author of the book Seeing Ability, host of the Seeing Ability Podcast, and most Importantly, father of two, including Sophia, 25, who has spina bifida, and cerebral palsy. We’ll hear Jim’s life story and all about his new book, now available on Amazon. That’s all on this Special Fathers Network dad to dad Podcast. Now say hello to the founder of the Special Fathers Network and host of the dad to dad Podcast, David Hirsch.

David Hirsch: Hi, I’m David Hirsch, host of the Special Fathers Network Dad to Dad podcast. Two short messages First, I’d like to invite you to attend the 6th Annual SFN Dad’s Virtual Conference taking place via Zoom on Saturday, May 10th at 8:00am Central Time. We have a great rostero of speakers and there will be plenty of time for breakouts to meet like minded dads who are committed to their children and self improvement. Secondly, the Special Fathers Network Mastermind Group Experience is the most comprehensive program the 21st Century Dad’s Foundation offers. Dads raising children with special needs, meet virtually on a weekly basis and for meaningful relationships while sharing weekly wins, discussing books and sharing heartfelt challenges. One of the highlights of the year is attending an in person weekend retreat scheduled this year from September 5th to the 7th. As you think about the year ahead, I invite you to join one of the existing or soon to be formed SFN Mastermind groups and join a group of like-minded dads to become the best version of yourself. It might just transform your life like it’s done for so many others. For more information please go to the show notes or simply go to 21stcenturydads.org.

Tom Couch: Now let’s listen into this week’s conversation between Jim Littlefield-Dalmares and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Jim Littlefield-Dalmares of Louisville, Kentucky, who is the director of market development at BNI Middle Tennessee, author of the Book Seeing Ability and host of the Seeing Ability podcast, and perhaps most importantly, father of a child with spina bifida. Jim, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Jim Littlefield: So excited to be here. Thanks, David.

David Hirsch: You and your wife LeAnn have been married for 27 years, and at the proud parents of two, Peter, 21, and Sophia, 25, who was born very prematurely, has spina bifida and cerebral palsy. Let’s start with some background. Where did you grow up? Tell me something about your family.

Jim Littlefield: Absolutely. Well, I am a little bit unique in that I was born in Southern Illinois, Decatur, Illinois. But because of my dad’s job, we moved a lot. So where I grew up, we moved six times. I went to three different high schools, so I got to see a little bit of the country. I’m not quite as extreme as a military brat, but I guess my dad worked for UPS, so I’m a UPS brat.

David Hirsch: Okay, so you mentioned your dad worked for UPS. what was his role there?

Jim Littlefield: So he started on the ground side and worked in accounting, for many, many years. And we moved around because, I guess, what’s that phrase? No good deed goes unpunished. He was good working with people, and so they would send him into a new area to take over an operation. Then he got a really unique opportunity to work in the airline. They had been a ground company for all those years. He was in finance on the airline, and we actually moved to Kentucky, where I live now, when they were putting together the airline, he ended up as the controller for the airline that was headquartered in Louisville, Kentucky.

David Hirsch: Got it. So you might be able to say that your dad was moving up with UPS.

Jim Littlefield: Something like that. Yeah, I like that.

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

Jim Littlefield: Oh, it’s really been close. He has always been in my corner. It’s interesting. I was thinking about that, preparing for this podcast, is my dad worked for UPS, and that’s a demanding corporate job, so he had long hours. They would sometimes do things called special assignment, where he might be working in a different city during the week but come home on the weekend. I thought about my childhood, and I thought, you know, as much as he worked, I never thought he wasn’t there, so he was very present. And when he was home and wasn’t at work, even if he got home late, he was always really present with us. I mean, I think outside of

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Jim Littlefield: work, his number one activity was being with my sister and I. So it was very close.

David Hirsch: Yeah, well, you’re talking my language. The importance of being present, not just financially, but physically, emotionally and spiritually. So that’s really good to know. Any important takeaways, lessons learned that you’ve tried to incorporate into your own fathering as a result of the influence your dad had?

Jim Littlefield: Oh my gosh, my dad is big on a lot of things. I think one thing that I always, he always said is God gave you two ears and one mouth and you should use them appropriately. I don’t think he made that up, but he said that a lot. He still says that. And yeah, he’s big on little sayings like that. So he was just a really good role model. I mean, there’s some people you meet in your life where you can honestly say that everybody knows them. Nobody would have a negative thing to say about them. And I was lucky that that’s my dad. So that’s a pretty good person to be, around and as your role model of how you should live your life.

David Hirsch: Yeah, well, that’s very enviable because, one of the reasons I help start these two not for profits is that there’s way, way too many kids growing up in father absent homes, dads that are not physically present and probably not emotionally spiritually present as well. And you know, it’s refreshing to hear every once in a while somebody like yourself singing their dad’s praises. And most importantly, your dad’s still alive. He’s like 84 or something.

Jim Littlefield: Just turned 84. Yep.

David Hirsch: Yeah. Yeah, so that’s exciting. He might even hear this podcast.

Jim Littlefield: Yeah. I’ve been fortunate to see my dad, as involvement with my daughter and my son both. And that’s been fun to watch since I never had that.

David Hirsch: So any other father figures, any other men that played an influential role in your life?

Jim Littlefield: You know, nothing that really come to mind outside my dad, partially because we moved often, so we, you know, our entrenchment in the community wasn’t as deep. Now we did live in Ohio and the Cleveland area. I think I usually measure it not by years, but by grades. I think I was in first through seventh grade and I was very involved in music. So I had a choir director there who was a really, really neat guy and really influenced my love of the arts. So probably, he was probably one good enough.

David Hirsch: So my recollection was that you took an undergrad at, IU Bloomington in marketing and Psychology. And I’m wondering, where did your career take you?

Jim Littlefield: First of all, I was very excited to be at Bloomington because I was in one place for four years in a row because I went to three different high schools. Imagine that. One in outside Chicago, one in Connecticut, and one in Kentucky. So really varied my career. I started out in financial services, ironically, for a few years, probably an environment where is way too much direct sales and not enough financial services. So I quickly switched to the nonprofit sector, where I kind of found a home. And I was there for about 23 years actually doing that work is where I intersected with my current job.

David Hirsch: So is BNI, the company they currently work for, is that considered not for profit or not?

Jim Littlefield: No, it’s a company. It was started out of Southern California. It’s now based in North Carolina. It’s about 40 years old. They’re all over the world, so they’re in, I think about 70. Some countries have about 11,000 chapters of business people that get together with, a unified vision of helping their businesses grow. Working more by referral. I was kind of a non traditional entry into BNI because I actually held the way the groups work is only one person per category. I held the seat as the nonprofit. So I was with all these business people, but I was like the charity guy, so I was a little bit different. Held that seed for about a decade. And in my work today, I work with a lot of nonprofits that joined BNI, and they typically come to me to say, how does it work? Because I had that experience doing that.

David Hirsch: I love it. And just for our listeners benefit, BNI stands for Business Network International.

Jim Littlefield: Absolutely. Yep.

David Hirsch: So out of curiosity, how did you and LeAnn meet?

Jim Littlefield: Through a coworker. So she worked at a hospital. She was a social worker. And I was really passionately involved with a nonprofit outside of my other nonprofit job. And that involvement in that nonprofit led me to her. One of her co workers introduced the two of us

David Hirsch: And the rest is history.

Jim Littlefield: That’s what they say.

David Hirsch: Okay, thanks for sharing. So let’s talk about special needs first on a personal level and then beyond. So prior to Sophia’s birth or diagnosis, did you or LeAnn have any connections to the world of disability or special needs?

Jim Littlefield: On a personal level and our family? No. But on a professional level, I spent about a decade working for the local United Way in Louisville, Kentucky. And so ironically, the agency that I ended up working for, where Sophie got a lot of her services was one I had toured many times. I had brought in the director, Dave Raymer, who ran the place where I eventually worked for as a speaker. When we would go into the corporate environment and we would say, hey, your donations are going to make a difference for places like the kids center. Here’s Dave to tell you about it. So I had a familiarity with a lot of the agencies that worked, but no personal experience, having a lot of friends or anybody in my family that had a disability they were dealing with.

David Hirsch: So if I could paraphrase, you had an awareness of the disability community but no direct connection?

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Jim Littlefield: Absolutely.

David Hirsch: So what is Sophia’s diagnosis and how did it come about?

Jim Littlefield: Yeah, so I like to say sometimes that the way Sophie came into the world, it was more like a car wreck than a celebration. So, we had just gotten back from a trip, overseas. My wife was about 25 and a half weeks pregnant, and it was the first time I didn’t go with her to one of her prenatal visits. Reunited way. I was doing an all staff retreat where you take everybody off site and you sing Kumbaya, you do the trust falls, all that stuff. I was on the planning committee and we had the skits and everything ready, and I said, honey, the retreat is tomorrow. I really can’t go. Call me when you’re done. It was the first time I missed one of her prenatal visits. Well, they called me from the office and said, you need to get to the hospital right now. What was happening brewing under the surface that we didn’t realize she was experiencing preeclampsia, or toxemia.

David Hirsch: Ah.

Jim Littlefield: And the only cure for that is delivery. So Sophie was born probably three days later. I remember when we went to the hospital, the first thing the doctor said is, I don’t think we’ll have to take the baby today. Now remember, this is like March 1st and she was due June. So when he said that, I think he kept talking, but I don’t think I heard a word he said after. It’like everything just went blank. She was born about three days later. She was a pound and a half in 26 weeks. Spent the first 10 weeks of her life in the hospital. She had all the things. She was, on the ventilator. She had a couple brain bleeds and fluid buildup. She had actually a condition called retinopathy of prematurity, or rop. Had she been born a few years later, she’d probably be totally blind today. They had developed a new laser surgery that luckily was able to correct it. So she’s always been sighted, but she’s got poor vision. She doesn’t have really good peripheral vision. Her diagnosis came later when she was probably about 2. The neurologist in town said that she has cerebral palsy. She had sp bifid occ cult as well. But CP rem main diagnosis or cerebral palsy, which is like a non progressive brain injury similar to a stroke and an adult. But its impact is really different based on the kid. So some kids, it involves their motor functioning, some it’s their cognitive abilities, their speech. In Sophie’s case, she needed, physical therapy and occupational therapy for some of her fine motor. It’s on the left side of her body, so she would stumble and fall. She wore braces when she was young. So we were really involved probably from birth until about age 9 in the world of therapy, the world of doctors. These kids have multiple things. So later on, not to go into too much detail, she had a tethered spinal cord and had that corrected surgically. And she did a lot of vision therapy as well as the OT and the PT. So we were kind of frequent flyers to therapy, dragging her little brother along to sit there during that time.

David Hirsch: Yeah, well, you mentioned that she was born, 26 weeks, a pound and a half. And she spent, was it 10 weeks in the NICU. I have this vision of this little itsy bitsy person in a incubator.

Jim Littlefield: Yeah.

David Hirsch: Or whatever you know, you might have referred to it as. And the kids there look like science fair projects. Right. With all the tubes and electronic things connected to their body.

Jim Littlefield: Yeah.

David Hirsch: Monitors and the beeping, you know, they just look so fragile, like they could just get blown away. Our second daughter Amanda was born not quite that early, but at 32 weeks, maybe 3 pounds, 5 ounces, I think it was. And she was in the NICU for a couple weeks and it was really touch and go you know, and she was like 2x the size of Sophie. So I’m thinking, well, how hard could that have been? But, you know, they’re fighters, I think it’s like a lot of things in life, you know, you know, if you get battle tested, you develop this resilience from a very, very early age. And my guess is that, Sophie is one of those people, they say.

Jim Littlefield: That the ones who make it out of the NICU, especially the girls, they’re fighters. And I always like to be reminded that that fierce independence is something that will serve her, well, in life, something that occasionally is challenging, being her parent, that’s a double edged sword. It’s good for her and her independence sometimes. I don’t have any hair anymore, so I can’t say gray hair. But it can be challenging. And you’re right, that NICU is a scary, terrifying, yet amazing place. We got such good care there. We had some nurses that we were just like family to them. As a matter of fact, my wife was a social worker when Sophie was born. But today she’s a labor and delivery nurse. And part of why she went into nursing was the care that she got when we were in the NICU combined with. She’s also a breast cancer survivor. Both of those experiences with nurses made her at a later age, go into the nursing profession.

David Hirsch: Yeah, I love it. Thank you for sharing. So I’m trying to roll the clock back to those early days, those early months, maybe the first year or two for that matter. What were some of the fears that, you faced as parents with a child that’s so fragile?

Jim Littlefield: I mean, all of them, basically you, you kind of go down the rabbit hole of worry. of course, when she was in the NICU,

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Jim Littlefield: well before she was born, I wasn’t sure if LeAnn was going to make it. So I thought I might lose my wife and lose my daughter. She was our first child. Once she’s born, like you said, she’s hooked up to all these monitors, you don’t know if she’s going to live and you definitely don’t know what her future is going to be like. And even though at that point she’s five days old, you’re wondering, is she going to get married? Is she going to have a job? Is she going to be picked on by other people? What’s her whole future going to be like? And as she developed, we weren’t really sure. So I think in the early years we had all those fears of like, we didn’t know because it’s a very inexact thing when you have a brain bleed and you have the fluid build up, what cognitive long term impacts it will have, what health long term impacts it will have. So it’s very easy to go down the rabbit hole and not just live for today and a better tomorrow, but kind of think what’s going to happen 20 years from now. So I guess what fears did we have? All of them.

David Hirsch: Yeah. Well, what you’re sort of touching on, you wrote about it in the book as well, is the importance of being present. You know, you sort of question yourself, is there something we could have, should have done right. In the past that would have prevented all this? And you could torture yourself by, you know, going backwards, or you can try to anticipate all the things that are, down the road and if you spend too much time there, you know, you’re really robbing yourself of the important point, which is, hey, we just, while we have is the here and now. Right. And we have to make the most of that. It’s not bad to anticipate a little bit down the road, but, you know, I can really relate to what you’re saying.

Jim Littlefield: Well, the idea that there’s a perceived future path as a bit of an illusion anyway. You know, sometimes it’s like you could have a kid who’s typically developing at a normal rate and you have no idea what they’re going toa be like when they’re 16 or 17 years old. It’s just that when you have a kid with some sort of difference or special need, you’re worrying about that a lot more than the average person. They probably should be worried about it too. They just think everything’s go, gonna be fine.

David Hirsch: Yep. Well, I think that that’s one of the things that, I’ve learned and it’s not unique to this special needs community, but I think it’s very prominent, which is you don’t take things for granted.

Jim Littlefield: Absolutely.

David Hirsch: And on average parents, not just dads, but moms and dads who have kiddos with, gradual medical situations, are on average more humble, less arrogant and less selfish. And I think that, you know, those are the type of people you want to spend more time with.

Jim Littlefield: Yeah, it’s an amazing community you meet, that’s for sure. It’s a club you never plan to join, but are sure glad you got there.

David Hirsch: Exactly. So was there any meaningful advice you got sort of early on that helped put the journey ahead into perspective?

Jim Littlefield: Well, we were really lucky. Still really good friends today with our pediatrician who had a lot of patients that kind of had a kind a niche in his practice of kids with special needs. So I mean, I think some of the things you’ve already alluded to about being present and you not worrying so much about what’s going to happen 20 years from now, but worrying about what you can do today I think is big. That was probably the best. And I think also for me, ironically, because I had that context from my United Way days of all the agencies and all the services and saw, I think sometimes People could think disability and think of all the negatives and all the challenges, but I also saw all the opportunities and the possibilities and had been around a lot of people knowing that it wasn’t a tragedy. It was just a different set of challenges. So I think that perspective made me maybe calmer than the average special needs parent, because I knew I had that awareness, that exposure, even though it was personal experience, that it wasn’t the end of the world. It was just going to be. Life is always full of challenges. This was just a different set of challenges.

David Hirsch: Yeah, well spoken. What were some of the more important decisions you made, looking back, over the last 25 years, that helped Sophie navigate the world?

Jim Littlefield: Well, I mean, one, we were lucky enough to make a decision. It was not easy, probably on the budget, but make a decision. We did have LeAnn stay home for many years. She was a social worker by background, so that kind of helped her almost be like my service coordinator or our service coordinator, because you end up being that, you know, you’re having all these therapies, these doctor appointments, different things. Again, her background in social work. When I did the research for the book that I wrote, anytime a family has a background as a nurse or social work or anything like that, it’s much easier for them to navigate these waters than somebody for whom every concept that comes up is just like you’re speaking a foreign language. So I think probably her staying home was one of the best decisions, so she could help really coordinate the care. We were very fortunate to do that. Like I said, we didn’t end up having a large income. I worked for a nonprofit. She stayed at home. So you can do the math. But it was a good decision.

David Hirsch: Yeah. Well, thanks for sharing. That is a really important decision. not to focus on the negative. But what were some of the bigger challenges that you faced related to Sophie situation?

Jim Littlefield: Well, one of them was because she was so premature and so fragile.

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Jim Littlefield: When she came home, she was only 3 pounds. And she came home actually on Mother’s Day. She was still on oxygen. We didn’t take her out much. There was a big risk for RSV and other kind of infections. So we were kind of like, you think of recent years, the COVID pandemic and kind of lockdown. We were kind of on lockdown. We were used to that. And, we have a famous story of we would sometimes drive together with Sophia in the car. One of us would sit in the car with her, and the other would just go walk around Target. So we could get and get out, and then we would take turns. I mean, we were really kind of isolated just to take extra precautions about infection in the early years.

David Hirsch: Yeah, well, that’s, a unique take on respite is that you drive to the target and one of you would get out and walk around for a little while.

Jim Littlefield: I mean, you do what you got to do, right?

David Hirsch: Have there been some turning points when you look back that said, oh, if it wasn’t for this or that, as far as her development intellectually or physical development for that matter?

Jim Littlefield: We were lucky enough, we thought about schooling for her when she was young. We didn’t know again, what the cognitive delays would be. So we started to look at the private school, arena for smaller class sizes, more attention. Should she need extra attention, she ended up not needing it. But that environment was very nurturing for her. She really flourished in that. So I think that was a big one. And then being connected to the place that I knew of when I was at United Way, where we got the bulk of our services, the Kids Center for Pediatric Therapies here in Louisville, where I eventually ended up becoming employed, that was like a home away from home. That’s like a big family. You’ve got people that have been there, They’ve helped families go through it. And of course, part of it is always connecting to other families that are in a similar path. So you feel not so alone. You get education, those two things. The right school environment, the right therapy, community support environment, or huge parts of our early success.

David Hirsch: Yeah, well, thanks for emphasizing that. I’m sort of curious to know what impact Sophie situations had on her younger brother, Peter, your marriage, or your extended family, for that matter.

Jim Littlefield: So we don’t have any family in Louisville. We’re kind of unique in that. My wife is from Lexington, which, for those who don’t know, it’s maybe about an hour away here in the same state, but still not at home. And my parents lived in Florida, so we didn’t, Our family was very supportive, but we didn’t have any. The network of the grandparents, the aunts, the uncles, right in the same city, that was a big thing. As far as Peter, I mean, you said something about not taking things for granted. I wanted to comment that, like, boy, when you saw him develop from a motor skill standpoint and the things he could just do without effort, we were just like, our jaws dropped because it took so long to do those things. And, you know, you see this other kid, just climb up the stairs, and you’re like, wow, that was so easy. That took her years to do.

David Hirsch: Like Hercules.

Jim Littlefield: Yeah, exactly. But that also helped her because the younger brother actually becomes the therapist to the sibling because they want to keep up with them. So I have a lot of families tell me that, that when you have a sibling, it’s almost like an in house therapist because kids want to do the same things and it kind of pushes the kid past their comfort zone in a way that parents can’t push because then you’re pushing a sibling. It’s just like, I want to hang out with you. Luckily, I, don’t think he had any really, fortunately, negative impacts from it. He’s a pretty happy go lucky kid who rolls with the punches. And like I said, the Kid Center was really good at making him feel included, even though he was the third wheel in therapy.

David Hirsch: Gotcha. And how about your marriage?

Jim Littlefield: Luckily, it, you know, we’re good communicators and we’ve been together for a long time and we’ve had a very blessed life. But sometimes we look back at it, we think, gosh, Sophia, that was a lot to handle. LeAnn had breast cancer. That was a lot to handle. We luckily seem to be able to handle it. I think we’re good friends first, and then we’re good friends that liked each other, I guess a lot more than friends. to add on top, I think that’s always the best recipe. So, yeah, there’s a lot of stresses, but luckily I think we just talk a lot and communicate and lean on each other and. And, I’ve been blessed that, we’ve had a great relationship.

David Hirsch: Yeah, well, glad to hear that as well. So, you already made reference to one of the supporting organizations being the Kid Center for Pediatric Care. Any other organizations that come to mind that played an influential role either for Sophia or for the family, for that matter?

Jim Littlefield: Yeah, they were the main ones. There was an organization that did, vision therapy here in town and then also in our city,  especially Kosair for Kids, which is kind of our local version of the Shriners Network. They’re really involved in supporting some of the hospitals that we were affiliated with, as well as even the Kids Center. They get some of their funding from them, so they’re a major partner with them, and it’s Kosair for Kids is our local flavor of the Shriners.

David Hirsch: Yeah, well, you bring back some really, really fond memories. My grandfather, Sam Solomon, the one I was super close to, the guy that I refer to as my father figure he was a mason, an a Shriner. Yeah, he had this, red fez,

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David Hirsch: right, that the Shriners would wear to their meetings. This is way back in the day. Like, we’re talking like, late 1960s, 1970s timeframe. We would go to the Shriner Circus in Chicago. And, it was like a spectacle. Right. You were such a little person. And there’s these big animals, the elephants and the giraffes and everything else. And, I always remember these Shriners like they all had their red fezzes on and some of the clowns would be like, you know, rolling around on these little tricycles. And that just brings such good memories. And it’s just, amazing that that organization still plays, an important role like they do.

Jim Littlefield: Yeah, the red fezzes are very prevalent in the Louisville area. They’re a big part of our community.

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.

David Hirsch: Let’s switch gears and talk about, beyond your own personal experience.

I was really excited to learn about this book, Seeing Ability, Finding your Path, and Parenting a Child with Special Needs. And it came out in September of 2024. It was published by Possibility Publications in Kentucky. And, I’m wondering, what was it that motivated you to put pen to paper or put, fingers to keyboard to get this project going?

Jim Littlefield: First of all, I’ve always enjoyed writing, so I’ve probably thought one day I’d love to write a book. I think a lot of us would. I wasn’t exactly sure what it would be, and I probably thought it wouldn’t be Harry Potter. I’ve kind of been more of a journalist at heart. And so it would be something that’s nonfiction. And what happened is I spent about a decade where, as I said, working for the Kids Center. I was at first a one and then eventually a two person department that did all of the outreach for the place. So the fundraising, whether it’s just doing a special event or the major giving, but also the communications, the website, the public relations, wore a lot of hats. And as part of that, I told the stories of Our family. So I was really consistent about doing a quarterly newsletter. And on the COVID of every newsletter was a family. So I kind of had to take their whole life story, boil it down to like 1,400 words or something like that for a story. So I met a lot of people, but I was kind of sharing their stories and hearing their challenges, hearing their common victories and their joy on this unexpected journey. in the back of my mind, I kept thinking, boy, there could be a book here. This would be a really good idea. And it’s kind of the book that I wish we had been given that book that I wish I had when we were in the NICU. Really the book that I never really had. So my approach to the book was not going to be just our story, you know, like as a dad or as a couple talking about our daughter. Again, I kind of had that journalist approach from doing. I mean, I was there 10 years and I did a quarterly newsletter. So that’s 40 interviews that I did. And so that was my approach to the book. I thought, you know, I’m going to interview families and I’m going to interview therapists, doctors, adults who grew up with a disability, parents currently raising little ones, parents who like that. They like to say, been there, done that, got the T shirt. Parents whose kids are like 25-30 years old. And I’ll do a bunch of those. I didn’t know how many. It ended up being over 100. This is not my full time work, so it was in nights and weekends. It took me about three years. And what came out of it is if you ask 100 people a set of questions, at the end you’ll probably get some good advice. So then I had, I hope so, very early on I started to have common themes. Almost every conversation we would bring up the concept of acceptance. And how do you get over the shock that this is not going to be the life you expected? The trip to Holland for those in the special needs community. Most have heard of that reference to that piece about where you’re flying to Italy and the pilot says, welcome to Holland. And it’s like, what? That’s not where we were going. So that was a theme. Another theme you mentioned it. Marriages, siblings, how to deal with doctors. Early on, that kind of became the outline of my questions and eventually the outline of the skeleton of the book, the chapters in the book. So that was the approach is do the interviews, put that together. Originally, my story was a part of it, kind of the introduction. With some good advice from folks. I partnered with in writing the book, it ends up being part of every chapter.

David Hirsch: Yeah, I love it. It’s brilliant page turner. I was underlining something on every page. I’m like, oh, my God, this is so well done. And, this is not like, my, first rodeo. I’ve interviewed well over 350 people, mostly, you know, parents in the disability community, so it was refreshing. I’m so excited that, our paths have crossed.

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Jim Littlefield: Well, from you, that means a lot. Thank you.

David Hirsch: So I’ve come up with a handful of questions based on my understanding of your work, the first of which is you titled the book Seeing Disability. By the way, I love the COVID image. Whoever did that was. It was, like, just brilliant with the glasses, and you could focus on the word ability, but you couldn’t see the diss. So that was brilliant visual. And, the path that, also was sort of weaved through the COVID because that’s the subtitle of the book. So, anyway, I’m just so excited about this. So the question is, you title the book Seeing Disability. What are the biggest societal blind spots you believe still exist when it comes to how people perceive disability?

Jim Littlefield: I’ll tell you. The origin of that image on the COVID is when I worked at the Kids Center. I was there for 10 years. You know, I was the outreach person. We would often bring people on tours, and I had this idea. I’ve never quite been able to pull it off, but I had this idea. Our tours would always start in the conference room. And what I would love to do is have the. Maybe there’s six or eight people. They sit down in chairs, and we give them a little welcome to the center on the board up in the front, where they had the projector screen and stuff. I’d like to have the word disability. And in front of them, they pick up a pair of glasses, and they put them on, and then they look at the board, and all they see is ability. Somehow those glasses magically erased the first three letters. But that concept of looking, when you think about most of us, we walk into a room, people judge the book by its cover.

David Hirsch: For sure.

Jim Littlefield: They have an impression. But if you’re a person in a wheelchair and you roll into a room, there’s automatically an assumption of who you are and what you’re capable of doing. That’s really not fair to the person you are. You kind of get labeled by the disability. It’s also nuanced and very different for families raising kids who don’t look different. They have A very severe or profoundly impactful disability. But on a face value, they look like everybody else that has its own challenges. So I think to answer your question, the biggest challenge is we don’t see people as people. We see people as disabled people or people with a disability. And to a T. If you talk to a lot of people who are or have raised kids with some kind of difference, I think even the word disability is kind of negative when you think about it. It’s like they have the lack of ability, disability. We all have disabilities. Whether you’re shy or whether you can’t play basketball or whether you can’t sing. We all have limitations, but we’re usually not defined by them. We have an incredible amount of capabilities in addition to our diminished abilities. Unfortunately, the world sees somebody with, say, down syndrome or spina and bifida or cerebral palsy, you name it, on the spectrum, and they kind of say that person is the spectrum, not that person is a person. And that’s just a part of who they are.

David Hirsch: Yeah, I think your point is a good one. We define people by their diagnosis or their disability. I know early on when I was taking a deeper dive in the world of disability and special needs, I think I must have used the word normal and somebody said, don’t use that word. Right. Because the opposite of normal is abnormal and that’s not what we’re referring to. So I’ve been disciplined to use the word typical. An atypical. It seems more descriptive and not judgmental. It’s not like a one’s a lot better, in one’s a lot worse. It’s just, you know, a simpler way to talk or think about things. And I think that’s what I heard you saying.

Jim Littlefield: Yeah, I appreciate that.

David Hirsch: In, what ways do you believe well intentioned inclusion efforts can unintentionally reinforce ableism or marginalized the disabled community?

Jim Littlefield: That’s a good question. I think with all the parents I interviewed for the book, there’s kind of a, balancing act. And I think a lot of parents find their own individual happy middle because there can be a really good part of your life where you hang out with others who are very similar. So let’s say you have a child with down syndrome. There’s great value from hanging out with sort of the down syndrome community. Right. And you find parents that are like you and have similar experiences. Your kid sees people that are like them. I think most people, and I can’t speak for all people about the people I interviewed would advocate that that’s a wonderful part of your experience. But probably most of them would also say being in just a typical environment where it’s super mixed and super inclusive and diverse, also has benefits. And I think I talked to parents who struggled between which one of those to choose. And I think sometimes we are too hard on ourselves about whether we choose one or the other. So I think there’s a balancing act and a nuance because I think inclusion is really good. I think there are some times where it’s really cool to hang out with people that get it, where you don’t have to do a lot of disqualifiers and prefaces to your comments because everybody in the room knows what you’ve gone through as a person traveling that path. So I probably don’t have a really good solution for that. I think it’s an ongoing challenge.

David Hirsch: Yeah, well, well stated. And you know, I think it, it almost depends on the environment. And what I mean

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David Hirsch: by that is that, you know, let’s just talk about education for a moment.

Jim Littlefield: Yeah.

David Hirsch: I think we’ve learned a lesson, right, over the last generation or generations that it’s a disadvantage to keep all the, quote, special needs kids in a segregated classroom. Yeah, right. It might be somehow logically more efficient from some perspective to do that from a teaching perspective. But I think that there’s, there’s a loss not only to those kids with the diagnosis, the IEPs, but the other students aren’t getting exposed to what the benefits and some of the insights that you gather from being exposed to people of all different types of abilities. So I think at least in the educational environment, there’s a huge benefit to airrring on the side of inclusion as opposed to, you know, being with people that are more similar in whatever description that might be.

Jim Littlefield: Yeah, I think that was universally true. And I talked to some parents that kind of went in and out of those environments also. It kind of can depend on age. You know, like, that’s the other thing is, I think development, like early years versus middle school versus high school, finding the right mix. But yeah, I think in general those people down the hall in that other world was very othering and very, like you said, not only rob them, but rob the kids who benefit from the typically abled, if you will, kids from being around people that are different. They learn a lot and they grow and they become way less judgmental and they’re just. It totally changes them when they’re around people who are different.

David Hirsch: Yeah, I learned about something and I’d never heard of the phrase before, but it’s called co teaching. And what they do is they, have two teachers in a classroom, one with, the experience with special needs, and one, general education, you know, teacher. And they’re sort of working together, right. So that these kids can all be in the same classroom. And I thought, oh, what a novel idea. That’s the way it just should be everywhere. But obviously that’s not the way our educational system has evolved. So you challenge the readers to see disability. How has your own perception changed over the years? And was there a specific moment or person that fundamentally shifted your perspective?

Jim Littlefield: Well, obviously my daughter was one and that experience shifted my perspective. And then, like I said, I had been aware of it when I was at the United Way, but it’s kind of a step removed when I worked at the kids center for a decade and met all those families and became intimately involved with them and met their kids again. Because Sophia was so fortunate. She’s not in a wheelchair, she’s not nonverbal, she’s not a kid who can’t feed herself. I met all those kind of kids and met their parents and really got to know the kid and the parents and the journey. So I think that was a turning point for me. Obviously we had like, we had an individual and our board of directors who was an adult who was fully functional at an engineering firm, had cerebral palsy. That not only affected his motor skills, affected his speech, but he’s super smart, didn’t affect him cognitively. I think being around all those role models of like, what’s capable and how much more potential people have than probably most people give them credit for. That was totally the turning point for me. There was an early theme in the interviews of this idea of expectations and this idea of being that overprotective bubble wrap parent who swoops in and never wants their kid to sort of fall down, figuratively, literally, or the parent who realizes part of life is learning to get back up. And so for kids with disabilities, finding that balance, to let them do stuff and let them in a safe environment, learn, the growth comes in the stretch and the ability to overcome an obstacle and learn how to do something. But if you never let them stretch, I mean, most of the parents that I talked to had to have an, evolution themselves of being able to pull back and even though it was uncomfortable letting their kid learn through failure like every other kid does.

David Hirsch: Absolutely.

Jim Littlefield: And that’s s a huge part of the journey for almost every parent. The Other big part of it that I think, one parent said this, and it really stood out for me, and I think it’s universally true, is she said, my life totally changed the day I stopped trying to fix my kid. The day I learned that they are who they are. And then my goal from there forward was, like any parent, I want them to have the best life possible. I want them to grow up to be a happy, independent, productive adult. But I’m not doing it from a standpoint that there’s something wrong that needs to be fixed. She said, that the freedom she had once she let go of that was just life altering. And I thought that quote has stuck with me ever since we had that interview.

David Hirsch: Yeah. Well, the two thoughts that come to mind is it’s a liberating experience, like

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David Hirsch: you were just saying, and it’s a game changer. Right. It’s like a paradigm shift.

Jim Littlefield: Yeah.

David Hirsch: You know, when you can move to that point and, I don’t think you could read a book or listen to a podcast. You have to come to that realization in your own time and space. And you’d like to think every parent could get there. And, the last thought that comes to mind is that, you know, having surrounded myself with eight or nine hundred dads who have kids with special needs, many of them have said, I wish there was something like this. The Special Father’s Network books like Seeing Abilities when I was a younger dad.

Jim Littlefield: Right.

David Hirsch: And the afterthought to that is knowing everything I know now, I wouldn’t change anything. Right. I would not have asked for a child with special needs. I didn’t want to be a member of that club, like you’ve been often quoted as saying. But, you know, when you look back and you’re like, I’m happy with my life. Right. I’m happy with how everything has turned out. I’m happy with my friend group. Right. I’m sort of comfortable. And I would hope that every parent, mom or dad, could get to that realization themselves.

Jim Littlefield: Absolutely.

David Hirsch: So let’s talk about the podcast, which goes by the same name, Seeing Ability.

Jim Littlefield: Well, hello everybody, and welcome to the Seeing Ability Podcast. On our podcast, we’re going to be talking with people with disabilities and those who support them. We’re going to have conversations with parents, with therapists, medical providers. The other part of this journey, writing the book, was about 10 interviews out of my 100 in somebody said, hey, this would make a great podcast. And I was kind of like, oh, that’s a great idea. I have no idea how to do a podcast. Well, one of the benefits of my day job, BNI Business Networking International, is you tend to have a guy or a gal who can do everything. You need a roof, you need an estate plan, you need a chiropractor. I got one. Well, I had somebody that knew how to do a podcast. So, the podcast is the same name as you said earlier. And my approach to it, again, I do it in my spare time, so I do two episodes a month. One is, individual traveling this path. And because of my 23 year career, I focus on a nonprofit doing this work. And I’ve met some as you have. Obviously you’re a way more veteran at this than me. To this co teaching idea that you just mentioned. So many people doing such innovative work. It’s really inspiring. So many people in this community.

David Hirsch: You’ve interviewed, more than 50 people know. I was sort of curious to see if we had interviewed some of the same people. And I was thrilled to see that you had also interviewed, Mark and John Cronin from John’s Crazy Socks. I just love those guys. As a business person, it’s just like, oh, my God, I want to be more like them. they don’t use the term social entrepreneur, but, I think of them as social entrepreneurs. They’re taking sort of these for profit ideas and bringing them to bear for the benefit of the community. Yeah, so you mentioned earlier that, somebody had sort of planted the seed about, oh, you know, you got all these stories, you know, what do you think about podcasting? And, how did that transpire?

Jim Littlefield: It was probably pretty natural for me because I had again spent all that time interviewing families. It just wasn’t with a microphone in front of us. I had again been kind of a journalist at heart most of my writing career. It was a pretty easy, transition. I think I felt myself to be a pretty comfortable host. And they just have such great stories. I mean, I think a lot of people that traveled this path would love a chance to share their story with somebody and I think that is really neat. Parents open up, their favorite subject is their kids. Anyway, so all parents. So that was good. And then, like I said, I have a passion for nonprofits. So I thought if my podcast could just shine a light on a, group that’s doing something most people are familiar with, but even something that people don’t know about. You know – a small – a lot of mine aren’t the big nonprofits, they’re the little ones. You’ve never heard of just to shine a light on their work. I would say 70% of the episodes we do are about insights along the journey. And I always laughingly tell them the last 30%. I want it to be shameless promotion. Tell the folks about your website. Tell them what you need. I’m hoping it inspires donations. I’m an old fundraiser at Heart, so it never gets out of the blood.

David Hirsch: I love it. If we were to direct our listeners to just one of your episodes. Which one would you want them to listen to?

Jim Littlefield: Oh, gosh, that’s a challenge. probably, Smile. There’s an organization called Smile on Down Syndrome in Evansville. That was a really great one. But there’s also a quote, I guess it was, Waves in Franklin, Tennessee. They were on. And one of the ladies from Waves tells this story about how she has a son, an adult son with down syndrome, and the way she found out about his diagnoses. She was in the hospital and she said, I’m a list maker. And I knew I had to get that baby and put them to breast and breastfeed. So she called down to the nursery and said, can you bring my son to me? Pick up the phone and call the nursery. And I say, hey, this is Gina. I would like to try to nurse my baby. it’s Eric. And, the lady said, oh, the baby with down syndrome? Wow. I said, no. I

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Jim Littlefield: said, eric Wilson, but, yes, ma’am. Have him down in a moment. They hung up. And I’m thinking, what on earth? Why would they say that? You know, why would someone say that?

David Hirsch: Did they get her babies mixed up?

Jim Littlefield: I better get my baby back in here. A few minutes after that, the pediatrician came in and she said, I think we’re going to run further tests. And that’s when I knew.

David Hirsch: Oh, my God.

Jim Littlefield: And that’s how she found out.

David Hirsch: Oh, my God.

Jim Littlefield: And when I heard that, you know, my jaw dropped and it just kind of gave me shivers in not a good way. that’s an episode that’s really interesting and just talking about, you know, that. That and that being the way she found out about how her child had down syndrome. I’ve heard some amazing things from people. luckily, they tend to open up and talk about those real, raw experiences.

David Hirsch: Yeah, well, thanks for sharing.

David Hirsch:  So you also made reference to a foundation. What’s the, purpose? What’s the mission of your foundation?

Jim Littlefield: Yeah, it’s very new. So just about a year old, and initially a lot of it is getting funding to help then support the podcast and kind of the overhead, cost of it, things like that. We’ve also had a few things where we’ve been, like, said, sponsoring, being able to donate the book, to several nonprofits doing the work where they have the population. I’ve had a couple of times where I’ve been brought in just as a speaker at the local level. But we’ll be able to fund giving a book to everybody who’s there through the foundation.

David Hirsch: I love it, but we’ll have to circle back years down the road and see, what this new endeavor of your here’s, results in.

David Hirsch: I’m thinking about advice now, and I’m wondering what advice you can share with parents, specifically dads who might find themselves at the beginning of their journey or maybe midway, in their journey, raising a child with a disability or special needs.

Jim Littlefield: Well, I think a big one is grace. You know, we tend to be hard on ourselves as parents, and I think we all do the best we can. that’s one, I think, for a special needs dad, it’s that connectivity with your significant other, your wife or your significant other to learn what they’re going through and really meet them and be a good partner to them. Because it is really tough. I mean, any external challenge, childhood cancer, I mean, on a family is going to be a challenge. And I think communication is how you get through that. But then I think, probably the biggest advice that almost all parents had that I talked to and I would echo it is like finding your village, you know, finding your community. I mean, what you do with special needs dads, I mean, that’s obviously a godsend to find others who have been in the same boat and can say, it’s going to be okay and you’re not alone. And I was there too, and I felt the same way you did. But look at my kid now, and here’s where we are, and just that hope that you can get. I mean, it can be very isolating and you can feel like what you’re going through, nobody else is going through, and you’re just at your wits’s end on how to solve it. But if you find that community, you realize, oh, everybody goes through this. I’m not crazy.

David Hirsch: Yeah, well, part of the challenge, at least from my perspective, is that, men, virtually all men on the planet, so that’s like 4 billion of us, have testosterone poisoning, which sort of results in the inability to pull over and ask for directions when we’re lost. So we’re going to Try to figure it out ourselves. And it can be very isolating. And anything we can do to encourage brothers to seek advice, it’s not a weakness, it’s a strength, right, to connect with other people. Anyway, I’m hoping, you know, more conversations like this help remind people that, you know, it’s okay to, you know, not have all the answers, but it’s important to try to figure out where can I find the information I need, not for my own personal benefit, but more importantly, for the benefit of my child or my children.

Jim Littlefield: Yeah, that’s. That’s another book. It sounds like it’s okay to ask for directions.

David Hirsch: So, why have you agreed to be a mentor father as part of the Special Father’s Network?

Jim Littlefield: Anytime you can pass on your. What you’ve learned and how you’ve benefited from it to somebody else. I mean, I think mentoring is the biggest gift you can give. And in this particular niche of community, it’s so uniquely challenging that if you can find somebody that’s like, hey, I’ve been there, it’s going to be okay. It’s hard to put a, value on that. I mean, I think it’s really invaluable to people to just know that somebody gets them.

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

Jim Littlefield: It’s been. I mean, I love what you’re doing. I’m glad our paths crossed. That’s the neat thing about this work is so many different people connect you to different people. not all of us know each other. That’s amazing, too. You know, you would think we do, but we don’t. And we’re making those connections. So just being able to talk to your folks. And again, for my podcast, I’m looking for that nonprofit that, you know, around the country

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Jim Littlefield: that’s doing really cool stuff. I want to share, share their story, and again, I want to find places that want to get a book like this in the hands of their people because it really, it really makes a huge difference when you can have something like that, connect to you. So, yeah, it’s been a pleasure for me to chat with you and I love listening to your podcast. And thanks for having me.

David Hirsch: Let’s give a special shout out to Scott Malsby, another SFN mentor father in Lebanon, Tennessee, who has featured in EP episode 327 of the Special Fathers s Network D to dad Podcast for helping connect us.

Jim Littlefield: Fantastic. And I guess if folks want to learn more about me. It’s a pretty easy seeability.com is my website.

David Hirsch: Well Jim, thank you for your time and many insights. As a reminder, Jim is just one of the dads who’s part of the Special Father’network a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or our 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. Hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dad’s 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 acceptable contribution? I would really appreciate your support Jim. Thanks again.

Jim Littlefield: Thank you. Good to be here.

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 Amgen. Committed to unlocking the potential of biology for patients suffering from serious illnesses by discovering, developing, manufacturing and delivering innovative human therapeutics. Discover more about Amgen’s mission at Amgen.com.

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