242 – Dr. Cole Galloway of Cleveland, OH Father of Three & Creator Of Go Baby Go, A Human Rights Movement Promoting Mobility

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.

He had a million dollar idea. Not a million dollars for himself, but on behalf of an untold number of special needs kids.

Cole Galloway: What we provide is power mobility devices and abilities for kids to rapidly, starting at six months of age, become mobile again.

Tom Couch: His name is Cole Galloway and he developed a small car that special needs kids could propel themselves that opened a whole new world of possibilities for them.

Cole Galloway: We’ve devised small robotic devices that get you driving at six months. I get phone calls from parents who have our robots at home saying, literally, you’ve created a monster. And then they say, thank you very much. When with a tear in their eye, they say, I didn’t realize what I was missing.

Tom Couch: He’s Cole Galloway and he’s David Hirsch’s guest this week on the Special Fathers Network Dad To Dad Podcast. Say hello now to David Hirsch.

David Hirsch: Hi, and thanks for listening to the Dad To Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.

Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. To find out more, go to 21stCenturyDads.org.

David Hirsch: And if you’re a dad looking for help or would like to offer help, we’d be honored to have you join our closed Facebook group. Please go to facebook.com, groups, and search “dad to dad”.

Tom Couch: So now let’s hear this incredible conversation between Cole Galloway and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Dr. Cole Galloway of Cleveland, Ohio, who for more than two decades was a professor of physical therapy at the University of Delaware and is founder of Go Baby Go, a human rights movement dedicated to promoting mobility and social mobility.

Cole, thank you for taking the time to do a podcast interview for the Special Fathers Network Dad To Dad Podcast.

Cole Galloway: My pleasure. This is gonna be fun. I’m looking forward to this.

David Hirsch: You’re the proud father of three boys, Nicholas 24, Nathan 21, and Nevin 18 who has undiagnosed attention issues. Let’s start with some background. Where did you grow up? Tell me something about your family.

Cole Galloway: Yes, my family. Right away you need to know that my family growing up I had Southern Living and Rolling Stone Magazine on the same coffee table. That’s how I cut to the cha… [laughing] cut to the chase.

I grew up in the deep south. I was born in Hattiesburg, Mississippi. All my people, as they say, come from the deep south. Southernwise, I escaped when we went to physical therapy school in Richmond, Virginia. Mixed into that smoothie was a mom who was a creative writing teacher in high school, 40 years in high school. My dad did a range of things. Started out as a concert pianist, was also in corporate America for a time.

I thought everybody had gay poets from New Orleans in their living room regularly. I thought that was just part of what everybody figured out to do in the South. So when I got out of the south and came around to the rest of the world, I realized like everybody didn’t grow up that same way. I’m very much a southerner in a lot of ways. Come football time in the fall, we get serious about football. I feel very comfortable in a Walmart. I feel less comfortable giving a TED talk at the Kennedy Center. So that gives you a nutshell of who I am.

David Hirsch: Yeah. Thanks for the flyby and the fact that it’s a smoothie. I like that visual image. Out of curiosity, what does your dad do for a living?

Cole Galloway: See, yeah, so he started out as a minister of music in the Baptist church in the mid sixties and in the south when I was born. And then did a little bit of that and then got into being a college professor of piano. He did that for most of his career. And then after that was working in Alpha Insurance, a big insurance company in Alabama working with individuals.

But everything he’s always done has been very person to person. He’s a very, he’s known as a very person. And from the south, everybody’s a storyteller. So people figure into stories. And we had a extremely normal growing up time, except like I said, when I get out, I got out and I was like, not everybody went to concerts to hear Rachmaninoff, and then went and rode ponies. That mix would come back as I’ve gotten older of sophisticated arts and just a nice barbecue in the backyard. That science and music also is another kind of smoothie. I have mathematicians in my extended family and my brother’s an accomplished artist, a classically trained portrait painter. So you’ll see that weave in as we go forward in my career, that I’ve never been able to get away from wanting to connect with individuals through science, which is not always the easiest thing.

David Hirsch: That’s great. So how would you characterize your relationship with your dad?

Cole Galloway: I’m a mama’s boy. Let’s start right there. Anybody that knows me and knows my family because both my brother and I are that way. My mom’s a strong lady and a sweet lady.

Dad was more pragmatic, he was more disciplinarian. He was more, he was catching up to the daily life. Mom and I and my brother were living the day that I’m a school kid and moms and dad was coming in and trying to play catch up. But dad was always game. Dad, and… But we were matriarchal, we were, our family was very much a mom-driven family.

And it was three boys and mom, and that worked. That I think that worked. They’re still happily married and they’re so connected now, maybe even more than ever. So they married at 20, 21, so they’ve been around each other a long time and they still like each other, which is just… I don’t understand. How is that possible? But they do it. Yeah.

David Hirsch: That’s remarkable. When you think about your dad, is there a takeaway or two that comes to mind, a lesson learned?

Cole Galloway: His respect for other people, his respect for other people. It wasn’t superficially, we treat people certain ways when people are watching. My, my mom would have friends who were gay and poets like I said. I never picked up on a blip of anything. Just all people are weird. All people are eccentric. Those guys are really weird and eccentric. That’s cool. New foods are cool. New people are cool. I got a very strong structure of that different meant go see what that… A curiosity versus a judgment. My dad bought into all that. He was very chameleon and picking up where he was in the moment. And making those people feel like that’s exactly where he wanted to be and he wanted to know about your culture and he wanted to delve into that. And that’s that rubbed off on, I think all of us and my mom’s the same way.

David Hirsch: Yeah. Thanks for sharing. It’s a pretty amazing insight when you look back on it, and maybe you didn’t appreciate it or recognize it at the time, but you can look back on it and say, yeah, that, oh, that was unique.

Cole Galloway: Oh, my dad when I was in high school was the dumbest guy I knew. I don’t know how he got so I don’t know how he got so smart, but probably just when I left he got smart. But yeah…

David Hirsch: It’s a Mark Twain quote, I think. Yeah.

Cole Galloway: Yeah. That really is the case.

David Hirsch: Were there any other men who played an influential role in your life? A father figure of sorts.

Cole Galloway: Roger Franklin is a name that comes up, and I think about this guy all the time because of the music. I was playing, the coronet, this smaller version of the trumpet. And I don’t know why. I wasn’t a particularly good musician. I hated to practice. I loved performance. And this band director, high school band director said, Hey, come play with the high school band. I was in a sea of upperclassmen. Tim Collins, this senior. Why did he hang out with me? No idea. I could not have been more dorky, I think. I was so happy to be there. So there was not just one guy. It was a connection into the group. And so funny that I work so hard now to place kids in those kind of social situations so they can integrate, they can get pressure. And man, that, that year as an eighth grader traveling on the high school bus all over with football games in the south, are you kidding me? I must have given me tremendous confidence to, to do stuff.

David Hirsch: Yeah. Thank God for people like Mr. Franklin, thanks for sharing.

So my recollection was from an educational standpoint, you have two undergraduate degrees. One from Virginia Commonwealth University, a bachelor’s degree in physical therapy, and another bachelor’s degree from the University of Southern Mississippi in kinesiology and exercise science. If that wasn’t enough, you also got your PhD from the University of Arizona and you have a doctorate in philosophy and a PhD in neuroscience. Were there some gaps between your educational experience?

Cole Galloway: Yes. So I, I got accepted to the University of Southern Mississippi and so I looked around and when… I love movement. I love sports and movement. I wanna do something with movement. And then I volunteered at a PT clinic and thought I wanna work with people that have brain injuries and are learning to move again. And that’s what connected me to Virginia Commonwealth. Another guy, Carol Brown, who was a PT at this non-remarkable PT clinic, but he said, you’re gonna be something special. Go to this school.

So I run to Richmond and then get a bunch more mentors. It’s the first time that science and clinical caring went together. And Richmond was really great. Got a bunch of mentors there. They said, as your first job, go to a place you don’t feel like you are good enough for. And that was Woodrow Wilson Rehab Center outside of Charlottesville.

And that’s where I did clinical work for three or four years, and that led me to the PhD at Arizona. It all seems very linear, right? When you look back.

David Hirsch: Oh, yeah. You can only connect the dots looking backwards. I’m convinced of that.

Cole Galloway: Yeah.

David Hirsch: You took your degree, your doctor of philosophy and PhD in neuroscience and then, did that lead you to the University of Delaware directly or was there a couple steps along the way?

Cole Galloway: There was a good step. So at Arizona I had more fun. I believe this, there probably has never been a person get a PhD that had more fun. Because remember where I came from. At Tucson, there is no reason that University of Arizona should have let me in a PhD program. I didn’t have a master’s degree. I had two bachelor’s. I’m nothing. I’ve never published. Doug Stewart, a legend in spinal cord motor neuron… There’s special cells in the spinal cord that send the final messages to your muscles from the brain. Doug Stewart, an Australian… I think his aunt was a legendary pioneer in physical therapy.

So for some reason Doug loved physical therapists. He loved capturing them and making them into scientists. And here I came along. So my mentor there, Gail Koshan, was a PhD PT, so it was a perfect match. But David, I ascended into Tucson. And it was Mexican and Indian cultures. And I just got married and it was mountains, it was adventure.

And these almost Nobel laureates were in T-shirts and shorts and flip flops. And I thought, I don’t know what the fudge this is, but this is me for five years. I enjoyed every second of that and did not wanna leave Tucson. I wanted to learn something different. And Esther Theland’s lab… Esther Theland on the science side rescued baby research and put the grounded everyday living room experiences for babies into the vernacular again.

And she needed a postdoc. And I called her in France and I went, you don’t know me. I don’t know you very well. I’ve read your stuff in PT school, but I’m, I need to be your postdoc. And she was like, I don’t know who you are. Come give a talk. I came and give a talk. I do not know why she chose me, but I was in this world class developmental lab, and so that’s my two years of becoming a developmental psychology researcher which I could even tell then it’s very close to monkeys in the jungle. The most important things for babies the first two years of life are these physical and social experiences that are very grounded. That’s called embodied theory, embodied development or embodied cognition. She was on the forefront of that, so I got to experience like world class science and she was in her prime and she was kicking ass, taking names and getting lots of flack. And I got to see battles royale. I also had a baby of our own and was would soon to have two. So I was having a baby experiment at the house and most good baby researchers will tell you, you need to have had a baby and watched a baby.

So I was starting to go, you know what? I’m a baby guy and not just like baby, three years old. I’m a six month old. And that’s where I’ve stayed is flapping to reaching, kicking to walking every day, all day. I can watch it every day and it’s all the different… the family component all the way down to the biomechanical and gravity and dynamic systems theory and everything around there.

So that got me to Bloomington, Indiana and then University of Delaware comes along and in physical therapy at the time, if you wanted to do research and have protected time to do research, Delaware was one of the only places to go. And I was off with a new baby of, so two boys and yeah, off on the career at Delaware. Happy to be there.

David Hirsch: Yeah. Thanks for sharing. I’d like to take a step back and talk a little bit about your own personal experience being a dad before we jump in to Go Baby Go. And you have three boys, the youngest of the three, Nevin, who’s now 18, has I don’t wanna say struggled. Maybe I’ll let you describe the situation, but his learning experience has been different, and I’m wondering how would you characterize that, not from a clinical standpoint, but just from a dad’s perspective?

Cole Galloway: Nevin would not mind me saying that he’s adopted. His mom and I, Heather had just a wonderful adoption process. The adoption agency in Delaware… We had a great social worker. We had a fantastic social worker that gave me possibly the believe the, I don’t know how would you characterize that? She gave me a couple of sentences that would eventually change my entire career. When she said, when you, if people understand open adoptions where you under, the birth mom and the birth mom selects you, which we went through, and we love that process. You have a piece of paper that you check, you’ll you’ll select a baby that has the following.

We didn’t need a certain flavor of baby. We wanted a baby and we wanted a relationship with mom, birth mom. Which we have. Which we got. And so we bring the paper back and she said, I just want to, before I take them up, I just wanna leave you with one thing and give you five more minutes. Let’s go to, and I know you have questions about what’s the research on heroin or marijuana, all the factors. Mom incarcerated, dad incarcerated. I said, I wanna go to the heavy one so that I can give you something to think about. She goes, let’s go to incest. Something like that. A product of incest. Just remember, if you don’t select this category, that’s okay, but I want you to remember that those babies still exist. You’re just saying that you don’t want them. Okay, everybody take about 10 minutes, went out the door.

Mic drop moment. I was like, I almost stood up and went best educational moment I have ever heard about. And I’ve used that constantly as a reminder, and I think people can use that as, if I don’t want to deal with poverty in my life, I don’t want to deal with giving, I don’t want to deal with special needs kids in my professional or personal life. It’s not that they don’t exist, it’s just that you don’t have the time or resources or… And so we met Janae, the birth mom. Loved her. She loved us immediately. When you meet at a Denny’s or somewhere, do you shake a person’s hand? Do you hug them? Their family and strangers that say… So, in terms of adventures, it was amazing.

We were there for Neve’s birth outside of Philly. And so three, three guys, three boys and a new baby. And the categories were all the same. It’s just they were different kids and Nevin’s always been different. Nevin is an artist and his, when he thinks about life, he talks about it in a way that just makes you want to listen.

But if he is interested and does a project look out, he’s going to… he is a brown kid and now he’s a very big brown, 18 year old. And when his middle school senior project is on the Confederate flag and its meaning, and he does a whole booklet, my mom won’t give that book up. She’s this is a work of absolute genius and just the way that the dude thinks.

And I know we have a lot of special needs focused individuals listening, caregivers and parents and therapists. You understand that idea of disability is just the gap between an individual and the accommodations the world’s willing to befit. And Nevin increasingly has not, he would say he just doesn’t fit in the educational system.

But that doesn’t mean he doesn’t fit and is needed. And that’s the way I work with a lot of individuals with acquired brain injury, a lot of traumatic brain injury adults, and then lots of kids. And I think every parent thinks of their child as being special to them in terms of facing them and the child facing the parent.

I think it’s a reminder. As someone that’s not in the special needs community, not dis disability community, if you don’t allow your child out in the world, we, in the non-disabled community, we suffer from not having that person. Everybody talks inclusion and diversity and equity, but at sometimes it’s hard to really nail down like how much is lost when individuals are kept away or not included.

Yes, it helps the individual to be included. And as a parent, you want your child to be included, but also remind people like my child who uses wheels or speaks differently or looks a little off or thinks differently. Isn’t that what Google is looking for? When you talk about innovation, and I deal a lot with people asking me like, what’s innovation? Innovation is judged by people outside your field and it comes from a different way of seeing. So if you have a brain injury and you see the world differently, yes please. And we’re starting to get that with autism spectrum, right? That maybe these people have a place. No, they have a place. It’s whether we want to tap into the richness of including them in our community.

And I know everybody that hangs out with people with special needs feels immediately oh I’ve been missing out. Are you kidding me? Inclusion’s easy when you just respect the individual for what they authentically are. So this forced inclusion, it just means you’re not taking the time. Once you take the time, it’s wow, dude. Please.

David Hirsch: Yeah. Thanks for sharing. Nevin is really fortunate to have you and Heather as his parents. That’s what I’m hearing. That’s my take on this to being as open-minded and accepting and nurturing as you have been to help him reach his potential.

Let’s focus on Go Baby Go. This did not have a typical, oh, I have a vision. We’re gonna create a not-for-profit. We’re gonna do this in more of a traditional fashion. In fact, it’s not an organization in the traditioonal form. So where did the kernel of this idea begin for Go Baby Go? What’s the backstory?

Cole Galloway: Yeah, so when you look at it today in 2023, you see a science research service, educational collective of a couple of hundred formal chapters. And it starts with me as an assistant professor trying to get federal funding and get home by five if possible. And to do that, it is largely publishing and presenting. If you have a strong impact in the world, it’s difficult to measure and so people measure that by your impact factors of the journals and papers. At the beginning of most people’s career, that seems like a very clear goal and that was my goal. I happened to run across Sunil Agrawal, an engineer at Delaware, very accomplished engineer. He’s now at Columbia, very big deal, and he introduced small robots that were mobile and said, how about we get some babies together?

We got babies and these mobile robots that were drivable. Basically, they’re joystick driven little vehicles that have sensors and if you come upon a wall, it’ll turn you or stop. So that’s the robotic aspect. But the key is that babies can drive these with very little movement. And we put non-crawling babies. So before you could crawl at six or seven or eight months old, you’re constantly passively moved around, but you’re never actively, you don’t, you can’t crawl which is a big deal. And the biggest deal about crawling is it’s the first time that you actually decide to take your brain on a vacation. It’s the very first time.

And so moms and dads and people that love kids always look for those first things. And they also realize that once you start crawling or walking or being mobile in any way you can, whether it’s wheeled mobility in a chair, life changes. You can now direct. So that’s the agency, that pursuit of happiness kind of stuff.

If we take neurotypical kids and give them the ability to get around before they would normally get around, does that change their cognition, their thinking, their motor skills? Absolutely. If you were to take kids and find a way to give them early mobility, they should show cognitive language, perceptual understanding advanced.

And the kids did, and this was 20 minutes a day, three times a week, driving a car around. So for example, they walked earlier. They didn’t practice walking. They talked and thought a little bit more advanced, but they were just driving a joystick driven car for such little time. There’s no way this could be magic.

What, what actually was this doing? What was doing was probably exciting. What we come, came to call exploratory drive. They understood that they were controlling their movement through space and they took that back to their childcare classrooms and back to their living rooms and back to their life and apply this knowledge of, huh, three times a week when I see something over there, I can go get that thing and it tastes good, or it fell off and made a cool sound. Very salient to the brain. I want more of that.

So that was a big thing because we named it Babies Driving Robot, the media went nuts. So before I know it, I’m on all kinds of CNN and Discovery Channel. And the university’s in love. And the scientists are like, okay that’s incremental as most science is. But for the lay press it was cool. Baby’s driving robots, and it was super cute. Babies driving is super cute. Babies are super cute, and it’s very visual and it’s motion oriented. You got all that. And it was a way for me to talk about science. It was a great platform. So I started to learn Ooh, I like the media. It’s a way to talk about things I want to talk about.

Some conferences, very few conferences, but some conferences allow families to come if they’re like medical conferences. And that’s where the lines started to form after the talk. Scientists again, were not that excited. They were like yeah, they were, if anything, maybe they were jealous ah, they played the baby card.

But the families were like, this is all great. Where’s the commercial device? My child really needs it. They can’t get a power chair. They can’t get a manual chair until they’re way old. And I found out that lo and behold, and it’s still the case, that it can be a barrier filled journey to get a power wheelchair funded for a kid that can’t move or a manual chair. A little bit easier for manual, but maybe harder for a power.

And so kids can sit a year extra while their peers are out doing things. Two years extra, sometimes three. That’s changed. I think Go Baby Go and other things have changed that brings that number down. But lots of kids still are not moving. So families were telling me, you’re very important. Can you do this for us? Close the gap? The culture of academics and in my head said, no thank you. The urgency was, I need to use this time to get the next grant. I can’t let this just sit. Not what they were asking me to do, which is take a step back, partner with us as families, and let’s try to change the system. I didn’t even know the system.

Six months later it was six months full of trying to write the next grant. Trying to get home at five for dinner and trying to figure out a way to stop these parents from calling me. Back when we had voicemail on actual phones, I would come in and my phone, my office phone would be lit up with crying moms and begging dads, and I did not get it.

I had not spent time with them. I was a mobile adult listening to caregivers of immobile kids. And I spent some time with some therapists and realized there’s not a very good power chair for kids. That’s what these parents are… I need a translator, a clinical translator to say, why are they so much like this?

They’re so much like this because there’s, they’re watching their kids sit every day, and here you are talking about cognitive bumps and walking bumps and socialization abilities and participation. You’re dangling in front of them what I would, not very quickly, but now I look back, I would say was fraudulent. It’s fraud to dangle scientific findings in front of the lay people that, by the way, paid for this through federal taxes. Dangle this and then never have any authentic reality or drive to make this a reality. And that happens still a lot. There’s a lot of media coverage that back behind that there is no infrastructure to push this to where people think. So people have a stroke or go visit mom or dad after a brain injury or Parkinson’s and go like, where are all the robots?

Like I know there’s all kinds of sophisticated stuff and it’s not there. David Glanzman, a high school senior or a junior at the time comes and says, I’ll build that plastic car you talk about. Because I had thought that maybe I could get them off my back if instead of doing a company… I was smart by being dumb, saying I’m not smart enough to do a company. That would’ve tanked this whole thing, start a company.

I needed to fulfill some, for some reason, I needed to do something to get these parents off my back. So we went to Toys ‘R Us when it was still there and bought a Jeep and actually it’s a little quad, LiL, a Lil Quad. We still use Lil Quads. And we went to Joann Fabric to get some Velcro, and Lowe’s hardware or Home Depot or something for some pool noodles and a big red switch.

And we made these little toys into something that more kids could access. You didn’t have to move your leg to make it go, you could hit a switch that was arm driven. Great. Done. Nice. I can now go on. I can also show a slide. And this is what we offer. Thank you very much. Now look over here at the next grant.

Didn’t know what I was doing. So laughable now. This thing called Facebook was just getting rocking. I thought we’ll just put this hardware list up on Facebook. If I’d asked University of Delaware, they would’ve gone, no you cannot. Plus Fisher Price is gonna call you and have a cease and desist cuz you’re hacking their own commercial device.

I don’t know anything really. It’s not that I’m suave and go just run and then they’ll catch up to you. I was like, put the hardware list and instructions on, let’s have a Facebook site called Go Baby Go. Let’s call it Go Baby Go. That sounds cute and let’s do this. It’s hits. And then I get calls from people going, we want to start a chapter. So what, how do we start a chapter? We don’t have a chapter, David. There’s no thing the chapter, we don’t have policy procedures. I’m trying to put out this fire, with gasoline that I don’t even know. I’m just dumb enough to drive that gasoline truck over there. It’ll be good. And lo and behold, I started to have people calling me now saying, I wanna be involved, I wanna volunteer, I wanna donate.

And so we have chapters now. We have about 40 now, 40 or so. Papers, lots more presentations on the science of Go Baby Go. So I was able to trick NIH, maybe convince them on my scientific acumen. People would say, but maybe it’s just tricking NIH to support a toy based two-year project, an R21, you call it. That was with babies with Down syndrome.

And lo and behold, they showed cognitives. But I’m still not really buying into this. One thing another one other thing happened, and this is maybe instructive to people that love special needs populations, in that they know that disasters and opportunities live side by side. They’re neighbors. So you think something is an absolute disaster. You lost your social worker, you lost that counselor that your kid’s been with forever, and lo and behold, something magical happens in the next two weeks and you get something even better. You lost your counselor, but now your kid has a brand new friend they met at Panera as happenstance when you were taking them for their last counseling appointment, and you guys were both bemoaning things and you just, you know that non-linearity in the world.

University of Delaware says you need to stop building cars except for research. I’m like, oh, what? This is just getting started. Now I have to stop? Okay. Do you fight your university legal or do you say yes? I said, yes. Okay, great. We’ll only do this through research. We won’t do it through there. And what that did was allowed me to take that time that I would’ve been building myself and support some really fantastic researchers and clinicians and families to start their own.

So University of Delaware helped me do a distributed model. We just had a publication last year that was a business, a Harvard Business Journal style case study on Go Baby Go. [laughing] The poor authors kept going, okay but did you have any thought what, how do we teach students off of something that just was a travesty built on silliness, stumbling and not knowing what the fudge you were doing? But what it allowed, it allowed the community to dictate where we went. The fact that we, I tried to shut down Go Baby Go in the last 10 years twice, just to back off on it, and the community was like, oh no. We saw nope. Here’s some more keynote addresses. Here’s some more stuff that you need to go.

You need to travel over to New Zealand and give a keynote address. So they’ve kept me in it long enough to realize that this is a community organized collective in which the research service and training is really pointed toward assisting people. So much so that now we’ve realized that actually we need to get more positions of power within Go Baby Go, meaning chapter directors and other folks who have the lived experience of being disabled. I can only go so far. And actually when you look at it through that lens, this whole thing needs to be run by the people with lived experience. A large group of, and this, with 150 chapters, that means we’ve done 10,000, 11,000 cars. By the way, 330,000 to a million and a half kids in the US alone need adaptive play, could use our cars.

So scaling wise, we can’t get there without more help. And the big thing we can do to scale is actually get more and more Go Baby Go stuff into STEM classrooms in middle school and high school. So it really, now we’re gonna be counting on the community to build as part of their daylight science hours or club hours at scale.

And that’s what Toyota, Fisher Price, Mattel are really more interested in is how do we do that? So it’s funny that now my entire life breath is community driven. Serving the 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.

Cole Galloway: The best thing I’ve ever been told in a career is when caregivers go, I don’t know how you got it, but man, you get it. And I’m like, the way I get it is I spend sensible lunches and dinners with you all, not focus groups. But I embed myself in a community of caregivers and kids, and I listen to what you say you need, and I go out and do that.

That has to get out to professionals because as , as many of your listeners or caregivers, you, caregivers know. Experienced caregivers walk into a new situation and they can smell it. Either you understand your position, which is behind me, supporting and advising and building trust and friendships. Or I’m gonna, I’m gonna be at an arms length. I’m gonna be very respectful cuz the system is, may not treat me well if I’m not respectful to you, but I’m not gonna be authentic. And I’m addicted to that. I’m now that we talked about what’s next for my career. It’s to of course embed myself further and have PhD students and postdocs and designers with lived experience.

And that’s the mess that we’re in the medical model, whether it’s designing technology or the price of healthcare, is because the people with the lived experience don’t have positions of power. And that’s where it’s Medicare, Medicaid, physicians, but we all walk in, we’ve all met those social workers, physicians, therapists that do have some sense. Maybe they have a lived experience, maybe they’re just a community organizing mindset, and it’s just like a, it’s a godsend. And that’s what I want, that’s what I want to be.

David Hirsch: Yeah. Thank you for sharing. That is a wild story. And you can’t make this stuff up.

Cole Galloway: No.

David Hirsch: I think I shared with you in a previous conversation that there is this individual I met decades ago by the name of Dee Hock, who was the chairman, founder, if you will, of Visa International, the credit card processing company.

Cole Galloway: Great.

David Hirsch: And he coined this phrase of the chaortic organization, which is taking chaos and order and juxtaposing them together. And that’s the model that Visa was built on. It’s not the corporate model that everybody thinks. So Visa, MasterCard, they’re the same type of organizations? No, not at all.

And what you described to me was as close to what Dee Hock had explained decades and decades ago, which is that it needs to be organic. It needs to come from the community, for the community. And the community has to embrace whatever it is in this case, mobility for young people. Young people who might not otherwise have mobility in some cases.

And when you touch that cord, right, with those parents, those caregivers, those PTs, those OTs, right? It’s just like you said, it’s pouring gasoline on a fire and you don’t know what you’re looking at or what you’re creating, but you’ve really tapped into people’s energy, right? You know what really turns them on. And that’s what I find most inspiring about the Go Baby Go story. I can only imagine the headbutting that’s gone on over the last decade or decades at the University of Delaware with administrators and the legal department and all those things. We don’t need to go into that, but I can only imagine, how challenging this must have been for you and therefore for them as well.

But I do remember when I was on the University of Delaware website, I ran across something which I was quite surprised at, which I think dovetails into what you were talking about. There’s actually a 55-page manual that somebody can download, no cost. And this is the blueprint from what I took away from it for, if you want to take what we’re talking about, this Go Baby Go approach to converting devices, these relatively modest four wheel devices to help young people with their mobility. Is that what that manual is all about?

Cole Galloway: Yeah, that’s a, that’s an older manual. It’s free and it gets somebody started. It’s written for the middle school teacher and middle schooler, but it takes anybody off the street and gives them the concepts and issues behind what you’re trying to do.

The human, mobility is a human right. Actually, you’re talking to a human rights worker and we need to, and we need to act like that. And this curriculum has all that kind of thing as well as the circuitry and the building itself. But the power of providing in the classroom or in the clubhouse for anyone, a lady’s reading club.

And we have plenty of retired engineers and just regular folks that have no connection to disability community that want to build or raise money for other people to build. The cars come out and have an impact on a child’s life, and you need to get that right. If you don’t get that it’s just a PR and media performance.

But if you get it right and a child can actually drive toward their parents, they can drive away. You’re working with some pretty heady stuff. The way I describe it is like when you come to a workshop, we have chairs on the sidelines for parents and for everyone because there will be times where you need to sit your butt down before you faint.

And if you needed a recalibration, when you see a child move for the first time outta their own power, they hit the red switch and go a bit. They’re startled. They’ve moved their arm before and they’ve hit things, but they’ve never had a total body experience of going. And these are very, these are usually pretty young kids, so you can’t tell them when you hit this, you’re gonna go, but you hit it. And the optic flow flows, your vestibular inner ear goes proprioceptively across your body. You sense movement, pressure changes, and then you stop. And then you start. And it’s what’s called contingent learning. You’re figuring out that actually the movement of the car and of all this stimulation is contingent on your movement.

I’m actually doing it right now. I’m actually doing it right now. You can see on the individual human’s face and body posture. This is a big deal. I don’t know what this is. This is a very big deal. Now, if they’re older, if they have more experience, they’ll go for about 30 to 45 minutes their first time.

It may just be in circles. You look over at mom and dad, whoever’s loving the kid, and that’s when you say just go ahead and sit down. Sit down. It’s okay, because it’s not a pleasant sensation. It’s the only time I’ve ever felt it is the birth of Nicholas, my oldest. I was there and he came out and I got to feel his weight out of mom and I can remember feeling like almost sick to my stomach. Very strong, profound something, but it wasn’t pleasant. Everybody puts on a good show at the workshops. But families, it’s a stressful time because you’re seeing your child oftentimes in a way you haven’t seen them before, and it triggers all kinds of things that you know about mobility. Mobility is a human right, meaning mobility impacts everything it is to be human. So all of a sudden you realize, I don’t know my child. And the closest I can tell you is to something really magic is on the websites oftentimes you see this little girl driving a little Lightning McQueen, the red car from the first Cars movie. And she’s smiling. The story behind that is she was going around, around her first time driving, and we look over this Orlando Florida with her friend Jennifer Tucker, who runs the University of Central Florida chapter. And mom and grandma and granddad have their heads down and that’s not uncommon. And people get emotional, but we walk over and this little girl was a near drowning and she’s allowed the family’s been very participatory and allowed us to talk about them. And we said, are you guys okay? And they go, yeah. And she was just laughing and they goes, we’ve never heard her laugh.

David Hirsch: I got the goosebumps when you said that.

Cole Galloway: I get, yeah. I’ve told that hundreds of times, David. And it’s this tingle of that’s justice. That’s justice. And I don’t know, but we all sat down. It was like, whew, and you get that feeling of what do we, let’s don’t mess with it. This is rarefied air here.

And so when you come to those problems and administrators, people just know that if you’re a Go Baby Go person, you’re gonna be respectful and kind, but you’re privy to that. And then you will say things to people that you would never say, and you would do things and you’ll hold a line you would never hold.

I am not confrontational. Do not get between me and a kid in a car. And sixth graders need to know that there are so many sixth graders that don’t feel a part of things. When you build a car for a kid and you get to see that. So the building of it is transformative too in a small or a big way.

And that’s pretty, you get this seven layer dip of awesome, like how many more lives can we impact during the workshop? And if you put a little Arduino based tracker underneath the car, then that sixth grader can track that car in the community and write a essay on it and participate in BIGDATA sponsored by National Science Foundation.

It start. It’s a car. It’s just a dumb plastic car at the beginning, at the end, in the middle. No wonder, right? No wonder this thing has not stopped. There’s just too much here.

David Hirsch: Yeah. It’s amazing. So is the, you kept referring to middle school, but I know that it’s high school, community college, college for that matter. Is this under the banner of what you refer to as the kids Building for Kids program?

Cole Galloway: Yeah. So that, that, that curriculum we can send out. That’s a free curriculum that people can modify. Go Baby Go is an open source name. The Fisher Price folks have allowed us to use that Go Baby Go name.

People ask me all the time about when we start a chapter, how do you start a chapter? Start a chapter. Name it Go Baby Go or not. Use our logo and modify it or not. It’s open source. It would be great if you did name it Go Baby Go because it connects you to all the other stuff in Go Baby Go. So that’s usually the next question is people go, oh, how can I build?

Yeah, they can contact me directly. Or they can just start, they can just go online and find instructions. Go Baby Go Connect is a forum run by the Barstow High School chapter in Kansas City that you can find tons of hardware lists. It’s much more than just that 55 page. Google Go Baby Go, Go Baby Go Instructions, Go Baby Go handouts, Go Baby Go everything. Yeah, it’s, and again, this is a collective, this isn’t me. I’m not doing all this. I still do research on Go Baby Go and other technologies. My friend Jennifer Tucker down in Orlando also has, she’s really layered on the awesome layers by having older individuals with Down syndrome building for babies with Down syndrome.

So there’s just, there’s no end to how you can involve individuals. So everybody this, we’ve had third graders in Texas build cars. We’ve had camps, anything. So I will have failed if people go, Ooh, Go Baby Go is such a great thing. And he’s such a cool guy. Whatever. If they go, oh, I’ve got to do this. Yeah, you do. Yeah, you do. You deserve, you deserve being around these kids. And frankly, being able to tell a mom the most risky thing is not the circuitry cause it’s super easy, but the fact that you now have a mobile kid. You brought a kid that was not mobile in here and instead of having sort of nine months to a year to get prepared for baby, they’re mobile and having the parent go yeah, he’s, he… look at it. He’s right here. He’s having so much fun. I get it. I understand. He’s mobile crazy. Yeah. Come back here and then they’ll turn to me and go I’ve never said that. I’ve never said come back here cuz he’s had no place to go. Just dropping these Hallmark moments on your lap, you’ve created a monster. Don’t ever stop.

David Hirsch: Yeah. One of the images that comes to mind, I have two images that are coming to mind. One is Pandora’s Box. You’ve opened the box and it’s out now. You can’t stop it. And then I have this other image of a genie in a bottle. And you’ve somehow allowed him out and you’re not gonna get the genie back in the bottle. Which is a beautiful thing.

Okay. We’re having too much fun. I I know that we’re gonna have to wrap things up. So I want to ask you about advice. And remember our listening audience are mostly parents and caregivers who are raising children with special needs of all different ages and all different circumstances. And I’m thinking about advice now, and I’m wondering if there’s a piece of advice that you can offer that parent, maybe specifically the dad, who’s struggling with what his child can or maybe can’t do?

Cole Galloway: I go back to that mobility is a way, and this is moving through life in any way, and I would say socially included mobility and adventure. You’re not gonna know what’s around the corner, what you’re… just go there with your child. And in terms of mobility, they need your brain. This is from a neuroscience perspective, enriched environments, which is the world. All the social and physical things of enrichment are incredibly neuroprotective and your child, and you deserve, you need adventure and newness and drama and stress to a certain point, and your child does too.

So taking an adventure attitude. A person I love more than almost anybody has an older son with serious issues, and her adventure attitude has really helped. It doesn’t solve anything. There’s no cure. But adventure has a, an asset framing to it, a positive framing to it. I think that when caregivers are well fed and watered and ready to go, you do have to have that adventurous attitude.

Maybe realize that adventurous attitude and doing even the little things is having a deep impact on your loved one’s brain. And keep pushing. It’s not okay when the world says that you’re not included. And whose world is it, by the way? It’s you caregiver and it’s your loved one and it’s, go get that.

So it’s just another encouragement that we… and from someone out here waiting on you, please bring yourself to the party. And if the party doesn’t want you, make it your own party. And again, for caregivers, my sense is that they already know all this. They’ve already seen the ups and downs. If they had more time and more resources, yes. I’m just encouraging you from a different reason. Those of us out here that, that don’t have schizophrenia, that don’t have autism, that don’t have a genetic issue, that don’t have other types of barriers, we need you out here. You are part of what we’re lacking. And I think caregivers feel a lot of times that people don’t understand and they need to understand, then get out here. And don’t come out here to instruct us. Just be out here at the party, come to the ballgame. Be on the softball team. If your kid likes softball, be on the softball team. We don’t allow people like you on the softball team. Yes you do. Yes you do. Or we’ll start our own softball league.

And I will tell you right now, I will if it’s disability related and you need someone to creatively think about how you can take over your community, you just met somebody. I’m not the kind of person that tells you to back off. I’m gonna be the type of person that says, jump off. You’ll build your parachute on the way down because you and your child need it. Yes. But the world needs to be impacted by people like you and especially caregivers.

Who are you? And what is, what’s gonna be your contribution to the community outside of just being a caregiver? We need that. Again, I’m preaching to the choir, but just realize there are people like us out here that really do want you out here. And my mom would tell you, and my dad would tell you, when you tell Cole, no, don’t do it, I… even if it’s for my best benefit, I’m just not going, I just don’t trust that. And by the way, formal education in professional medical schools, PT/OTs are always looking for caregivers to come educate. You don’t have any time to do that, probably as a caregiver, but if you do have any interest, you are needed and very valuable.

David Hirsch: Yeah. Thank you for sharing. I think that point you made about having that adventuresome focus, that way of thinking about way of doing things and what comes to mind, and you didn’t mention it this way or you didn’t phrase it this way, but I think it has at some level stepping outside your comfort zone, and living life, not in a dangerous way, but putting yourself out there. That’s what I heard you saying. And that’s where the learning takes place. That’s where life is, right? Is not doing the same thing. Staying in your comfort zone. Staying in the cave, staying in the house, whatever that might mean. And I think it’s brilliant. So again, thanks for sharing. So I’m wondering if there’s anything else you’d like to say before we wrap up.

Cole Galloway: Just again, if this has tickled you, if you’re a caregiver and it’s tickled you and you’re sitting beside a kid or an adult that you care for that likes to do this kind of stuff or might like to do it, you need to do this stuff. This is, this is pretty fun. If you don’t know anything about building, then you’re me. I’m not a handyman. Don’t let me build anything. I’m the pass on how easy the hardware list and instructions have to be cuz if I can build it, literally a third grader can. That’s the only thing I would say is if you’d like to get involved, there’s a lot of ways to get involved.

If you’re a scientist or a person that loves science, you wanna study high impact stuff, this is a great thing to do, too.

David Hirsch: So if somebody wants to learn more about Go Baby Go or contact you, what’s the best way to do that?

Cole Galloway: Yeah, the easiest way is just instead of, I can give a, an email but you can just Google me at University of Delaware and find the contact information and we’ll Zoom or call. And you’ll have, get my text number and we’ll be off. And the distance between, hey, I’d like to build and building, sometimes is as little as days. Sometimes it’s a couple of months because you and another mom in El Paso wanna start your own chapter. That’s happened, that has happened. You have an LLC or a nonprofit that you want this to be involved in. We’ve done a thousand different ways. There’s always a way to do this.

David Hirsch: We’ll be sure to include the information in the show notes so it makes it easy as possible for people to follow up with you.

Cole Galloway: Oh, good.

David Hirsch: Cole, thank you for your time and many insights. As a reminder, Cole’s just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising children 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. Cole, thanks again.

Cole Galloway: Thanks. Go dads.

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.