Dad To Dad 447 – Jerry Rakfeldt of Santa Monica, CA Who Is An Entrepreneur, Co-Founder of Adrian’s Place & Father Of A Son With CP

Transcript:

Jerry Rakfeldt: So it was a dire situation where his Apgar. I don’t know, it might have been one or two. We never discussed it because it was so low. And he was in NICU for 124 days, not that I’m counting. Geez louise, he got the corner suite at that point.

David Hirsch: That’s our guest this week, Jerry Rakfeldt, an entrepreneur, marketing executive and disability advocate. He and his wife, Caddy, are parents to two children, Adrian and Sophia, who has cerebral palsy. Together they founded Adrian’s Place, a community activity center in Santa Monica, California. We’ll hear all about Jerry, his life and his work on this special Father’s Network Dad to Dad Podcast.

Jerry Rakfeldt: Dad to the dad, you’re not on your own. We walk this road together, heart and whole.

David Hirsch: 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 brief messages. First, I’m thrilled, thrilled to announce our new book, Dads Raising Children with Special Needs and Disabilities. A Guide for 21st Century Dads is now available on Audible, Amazon, Barnes Noble and other sites. Second, the Special Fathers Network US tour, a month long 50 state 60 plus stop tour, took place from May 21 to June 21. Mission accomplished. It was quite a journey with hundreds of new connections which will have a ripple effect for months and years to come. Thank you to the following partners, Gigi’s Playhouses, John’s Crazy Socks, Rotary Club of Chicago, and Special Olympics. Thanks. Also the 60 plus venue hosts, which included 12 Special Olympic State offices and 15 of the 62 JG’s playhouses. Special thanks to the RV crew mentioned here in order of appearance, Zane Kooks, Andrew McDowell, Nelson Raskoon, Charlie Hirsch and Steve Harris. You guys were amazing. And special thanks to all those who offered their prayers and provided financial support. This was clearly a team effort.

Jerry Rakfeldt: Through every season, in every stride, great dads are present. 247365.

David Hirsch: Now let’s listen in to this conversation between Jerry Rakfeldtt and David Hirsch.

David Hirsch: So I’m thrilled to be talking today with Jerry Rechfeld of Santa Monica, California, who is an entrepreneur, marketing executive, disability advocate and community leader. He and his wife Katty are co founders of Growing Side by Side and Adrian’s Place. And perhaps most importantly, Jerry is the father of two, including a son with cerebral palsy. Jerry, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Jerry Rakfeldt: Thank you so much for having me. And I’m Glad we could arrange this in person when I’m in Chicago. You brought some beautiful weather.

David Hirsch: Yeah, well, thank you. Maybe you brought the weather with you. You and your wife Katie have been married for 23 years and the proud parents of two children, Sophia, 19, and Adrian, 22, has cerebral palsy. Let’s start with some background. Where did you grow up? Tell me something about your family.

Jerry Rakfeldt: I think the number one thing is my dad was career military, so I’m the youngest of three. My sister’s five years older, my brother’s three. So they moved more than I did. But I was born in Washington D.C. and lived in Japan and lived in New York, but ultimately ended up near Monterey, California. That was his last posting and that’s where I was from second grade in the Monterey area. But I think the overriding is if you are with a career military person, your perspective of life is very different than those who aren’t. That is a defining part of a family.

David Hirsch: So he moved around a bit.

Jerry Rakfeldt: Moved around a bit. And you learn to adapt and adjust. It’s part of the DNA of a family like that.

David Hirsch: Yeah, well, the downside is maybe you don’t set the roots that you would

Jerry Rakfeldt: otherwise not set the roots. And I’m not known for setting deep roots. Yes, that was an active effort for many years to learn how to do that. But I made that a point in my life and now I’m as grounded as you could be. More grounded than perhaps I wanted to be.

David Hirsch: But you.

Jerry Rakfeldt: There you are.

David Hirsch: So is your dad still alive?

Jerry Rakfeldt: My dad is still alive. He does have terminal cancer. So this is something that I’m immediately processing in the last week. So that’s a big change because he has been a big influence in my life.

David Hirsch: Yeah, well, he’s 88, so not a spring chicken.

Jerry Rakfeldt: He’s not a spring chicken. Led a good life. He’s going to fight it and do his best. But he was, even though my parents were divorced, he was an inspiration of strength throughout my life.

David Hirsch: So when you think about your dad, how would you describe your relationship with him?

Jerry Rakfeldt: It’s always been good.

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Jerry Rakfeldt: But I would say that my parents relationship was not great and I think that caused a huge amount of stress in the family that created a lot of tension in the air and after I was 13, when they, when they parted and then he moved away but I would spend some and with him and spend as much time as I could.

David Hirsch: So did I remember that your mom had a illness?

Jerry Rakfeldt: Yes. And obviously that would be part of their challenge. My mom never had A diagnosis, but was likely schizophrenic. I was the youngest. And so during my high school, although my brother and sister were there, they really weren’t there. I was more there and I became keenly aware of the frank, imaginary world that she created that sustained her. But that was in high school. And then I lived overseas. I lived in Japan, 1998, and I came back and actually I haven’t seen her since. Probably I didn’t see her since for 20, 30 years before she passed away, because she, at that point she sort of denied she had a family. She knew she had a family, but she couldn’t deal with the fact of having. It’s hard to say.

David Hirsch: Yeah, well, sorry to hear that. It sounds like it was very disorienting.

Jerry Rakfeldt: Disorienting, but also you learn to forgive people. She did everything she could. And when she passed three years ago, that’s all you could say. She did the best she could. She wasn’t equipped to do more and she never sought help or support. But I’m still here and I. I’ve led a good life and it’s partially due to whatever she could give me.

David Hirsch: Absolutely. Thanks for sharing any important lessons, takeaways that come to mind when you think about your dad.

Jerry Rakfeldt: I. I don’t really think of one. I just think of the values that he had and that those values are very strong to me.

David Hirsch: So my recollection was from an education standpoint. You did your undergraduate at University of Oregon, so you’re a Duck.

Jerry Rakfeldt: I’m a duck.

David Hirsch: And you took an international marketing degree and then did you move right to Japan?

Jerry Rakfeldt: No, I. During my last year of college, I ended up in this cooperative education program at the Department of Commerce. So I spent six months in dc, Then Portland. And then I said, I’m not really. This isn’t my direction. So I bought a one way ticket to Hawaii and was staying in a youth hostel. That became my life for the next two years. I was helping part time in Hawaii and then I went to Europe for three months, backpack, went back, managed it, and then I went to Japan.

David Hirsch: So you spent a couple years in this youth hostel experience in Hawaii, and then that was a launching pad for Japan.

Jerry Rakfeldt: The next step was Japan. I went there and I taught English for a year. But then I got a job with Toyota Motor Corporation and that changed everything for me. And then I worked for Saatchi and Saatchi, who handled their advertising, where I was involved with the launch of Lexus in Taiwan, the launch of Toyota in Vietnam. I was In Vietnam for like six months in 96. And that’s quite the adventure and quite the time to be there. I had a really good time.

David Hirsch: So I’m out of curiosity, how did you and caddy meet?

Jerry Rakfeldt: So it does involve Japan in that. My first day teaching as a gaijin word for foreigner gentleman was there and, hey, what do we do? Let’s go to the beer garden and we go drinking. It turns out he started dating this Peruvian Japanese. My wife is ethnically Japanese and that is now my sister in law and brother in law. Years later. I met my wife like nine years after I knew them. And so I had met the family. I’d even been to Peru as a guest of theirs. And then my wife moved to the States and was staying with them and I was supposed to introduce her to my single friends. Well, yeah, that didn’t last too long.

David Hirsch: Yeah, well, fascinating. Thank you for sharing.

David Hirsch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in. 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: So what is

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David Hirsch: Adrian’s diagnosis and how did it come about?

Jerry Rakfeldt: So Adrian was born at 26 weeks. It’s interesting.

David Hirsch: He must have been like a pound or two.

Jerry Rakfeldt: He was two pounds.

David Hirsch: Yeah. Two pounds, yeah.

Jerry Rakfeldt: Wow. So actually, what happened to my wife, I just saw on TV two weeks ago, which was the last episode of the Pit, where they had a woman come in with preeclampsia, eclampsia, seizures. Not in that situation, but that is what happened to my wife. So it was a dire situation where, you know, his Apgar. I don’t know, it might have been one or two. We never discussed it because it was so low.

David Hirsch: Okay.

Jerry Rakfeldt: And he was in NICU for 124 days, not that I’m counting.

David Hirsch: Geez Louise.

Jerry Rakfeldt: He got the corner suite at that point.

David Hirsch: Yeah. Well, you probably saw a lot of other families coming and going.

Jerry Rakfeldt: I saw a lot of other families coming and going. And I may have mentioned it to you. What’s concerning is you’d see these. These couples, maybe they’re married, maybe they’re not. You don’t know who have a kid who has issues. They’re in NICU I don’t know what the long term prognosis is, but you go, they don’t have the foundation to potentially deal with this situation. And I, you know, we had a strong relationship and I, I didn’t think Adrian would have long term consequences. We didn’t know that for a few years. But just to see all these couples go in and go through this and, and to watch because we’re there for four months.

David Hirsch: Yeah. Well, it sounds like a surreal experience. You know, I can relate. Just on a very small level. Our oldest daughter was part of a set of twins. Lost one of the twins midway through the pregnancy. So multiple births or high risk to start with. This was a little higher risk. And she was born at 32 weeks, so, you know, quite a bit more developed than what you were just talking about. And she was, she looked like a science grid project. For the first couple weeks. I had all these tubes.

Jerry Rakfeldt: Oh, yeah. And the tubes. And it might. It took a day or so before I could get. My wife was obviously recovering and very ill, so it took her a couple days to go see Adrian. But yeah, he was there. Tried to make noise with his mouth, but there was nothing there. I mean.

David Hirsch: Yeah, yeah, it’s wild. So thanks for sharing. So what were some of the fears that you had, if you can roll back to that first four months, the first year or two?

Jerry Rakfeldt: Well, the first fear is the health of my wife because it was all traumatic and not having other children, we couldn’t tell necessarily the developmental levels or where he is or what he is. We’re being optimistic.

David Hirsch: No point of reference.

Jerry Rakfeldt: No point of reference. And he was born early and we know everything will be delayed. We’re very pragmatic people and we just did what we needed to do. We were able to give him an intervention program at ucla. We’re able to do these things, but the word cerebral palsy did not come out for probably until he was three or four. So we’re all, okay, he’s developmentally delayed, but, you know, likely to become typical or near typical. But it wasn’t until those words happened that I think it was a shock that it was like, okay, then you have to recalibrate everything from that point, which a lot of families need to.

David Hirsch: Yeah, well, thanks for emphasizing the point. So if I can paraphrase you, just thought he was small because he was born so prematurely. You know, it’s just going to take him a while to catch up to whatever. And it sounds like he was released from the hospital about. Around his due date.

Jerry Rakfeldt: Yes. Yeah. Yeah, pretty much, yeah.

David Hirsch: And you don’t know what you don’t

Jerry Rakfeldt: know, don’t know what you don’t.

David Hirsch: Right. So was there any meaningful advice you got from the point of calling it the diagnosis about CP being mentioned, or maybe that’s what this is, that help put this in perspective?

Jerry Rakfeldt: No, actually, not with nothing. I think it’s for those in the medical profession. They see this all the time. And we were at a, A clinic that handles cerebral palsy, ucla. I mean it’s good, but it’s matter of fact, says the neurologist is like, this is the way it is. You’re just going to have to adjust and accept that there are a lot of things aren’t going to happen in your life and have a nice day. And they were fine. But that’s a little shocking. You know, it’s. There’s no hand holding, like, oh my gosh, here you go. It’s just a matter of fact.

David Hirsch: So not to focus on the negative, but what have been some of the bigger challenges that you encountered as a couple or that Hadrian has encountered based on his situation?

Jerry Rakfeldt: There are so many different ways to say it, but overall we have been blessed in the ability to access resources. As we mentioned earlier, with someone who’s obviously in a wheelchair, you don’t have, you don’t have to prove a disability. He has significant cognitive impairment as well. And you know, as an example, at age 4, there was

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Jerry Rakfeldt: a reason that, you know, we had a pediatric neurology basically said he wasn’t going to talk.

David Hirsch: So he had not spoken for the first four years.

Jerry Rakfeldt: He had a couple words he’d say was everything. Which by the way, now we really can’t shut him up. It’s like, please. It’s repetitive, but I need to take my blessings. He’s able to communicate his needs. There are so many, so many challenges. Fortunately, we acquired a company in 2007. He was born in 2004. So I was able to be home, work from home most of that time. We were able to be there. We didn’t have other obligations. We were able to access great support through like UCLA intervention program. And we live in California, which we’re very happy with. California Children’s Services later on regional centers. But learning that and learning how to do with it is tough. The school’s generally fine consistency. We were in the Culver City School district for a while. We moved to Santa Monica because a little more stable as he got older. And he was in the Santa Monica schools from fourth grade up until he Just exited the transition program at age 22. So I think he was in high school for eight years or something crazy like that. So he just finished.

David Hirsch: Yeah. Well, you just enumerated a number of the supporting organizations, the UCLA Early Intervention Program, the California Children’s Services, the Regional center, all, you know, first class type of resources. But you don’t know what you don’t know. So there’s probably a steep learning curve, Right. To get plugged into what’s going on there.

Jerry Rakfeldt: You want to believe that you’re the exception to what is not going to have an exception for the most part. So you’re always hoping there’s something more. You know, talking to a PT early on, and it’s like, well, maybe Adrian’s delayed, but he’ll walk in a couple years. She kind of gives me the look. But then once you get used to the physical, then you have to go through the cognitive challenges. And not being able to tell a color until he was 8 or 9, he still can’t read to spell a word. He can generally know what it is if it’s short enough, but he’s got optical nerve damage, so he really can’t process everything. And my latest thing is I’m all into AI glasses, and we’re using the meta glasses and we’re trying to train them so to level the playing field, whatever you can. And this is for dads, a lot of dads, you know, you know, adapting big wheels so he can bike, doing anything and everything to offer him the opportunities.

David Hirsch: Absolutely. So I’m sort of curious now what impact these challenges have had on his younger sister, your marriage, or your extended family, for that matter.

Jerry Rakfeldt: Younger sister has a little bit of the other syndrome. She’s been great, but of course, you take the oxygen out of the room. What’s it for me? With that said, I have an amazing relationship with my daughter. Amazing. I could never have hoped for anything better. Sophia. I mention your name because you never feel like your name gets mentioned. There you go. But she’s felt the pressure in a way, to be in a traditional gender sense, both my son and my daughter. And, you know, she’s a D1 athlete, pole vault. She had to do this, she had to do that. We didn’t say it, but that’s how she evolved herself, is that she has to be everything because Adrian can’t.

David Hirsch: Yeah. Interesting insight. Thank you for sharing. Maybe she’s a little bit stronger person as a result of that.

Jerry Rakfeldt: Well, we’re at Legoland. You want to be in a. A stroller no, you’re walking, you can walk, you walk. She was capable. So immediately you said you’re capable of doing it. We’re not going to baby you through this. So she may be a little resentful of that, but she was also resourceful and ahead of her peers in terms of just managing her own life. And we’ve really emphasized. And now it’s about financial management and all that. You do it, you need to do it because you’re capable of doing it. So it’s a two edged sword on that.

David Hirsch: Yeah. Well, when I think of a parenting philosophy, it’s certainly the one I subscribe to or try to, which is don’t do for your kids what they could do for themselves.

Jerry Rakfeldt: Do for themselves. And it’s obvious in this situation what you can and can’t do. Marriages as you know, it’s a high divorce rate among families with special needs. And I, the level of stress is huge and immense. I think my wife and I have survived because we’re both very practical, functional, focused people to get things done. And that probably has obviously has detracted from

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Jerry Rakfeldt: us, her and I, and became even more so focused on your children. And you were in LA recently and I couldn’t meet you because we took our first week long trip as parents. My son’s 22. We finally were able to pull it together. And that’s great because at the end of it you have your wife and you have that relationship and it needs to be nurtured. It’s hard to do, as I’m sure everyone who would listen to this knows, it’s hard to do in a special needs family.

David Hirsch: Yeah. You have to be very intentional. Right. It needs to be a priority and it’s healthy. Right. You know, when you take a step back, we think of it as the importance of respite, either individually. Right. Being able to recharge your battery or if you are in a committed relationship, to be able to do things as a couple.

Jerry Rakfeldt: Yeah, the tag team scenario is tough. Okay, I stay home, you go out, you go out, I stay home. I’m going to take a trip with boys.

David Hirsch: Trip.

Jerry Rakfeldt: Well, you can do your girls trip. Yeah, that’s great. You work it out. But then hopefully you can develop an us part of it. I think the hardest part is behind us relating to raising our child at this point and we’ve done everything we can think of.

David Hirsch: Yeah. Well, let’s switch gears and talk about the beyond. What I think of as the beyond your own personal experience. You somehow someway found the bandwidth or Had a vision for creating the not for profit growing side by side, which is now known as Adrian’s Place foundation. And then the physical location known as Adrian’s Place. So what’s the backstory on that?

Jerry Rakfeldt: So the backstory, a timing, you know, timing has to come together. We had run a business, you know, we acquired a business in 2007 which enabled a lot of freedom. That merged my wife did the books. We knew how to run a business, pure and simple, just the nuts and bolts. But as we looked around, a lot of people who were delivering services don’t know how to run a business. They might be able to do something, but there’s more that can be created. And we felt, as I’m sure many people here, as our child got older. That’s great. For me personally, there’s nothing worse. Being in a waiting room, a physical, physical therapy and feel like an elevator if someone’s there. Were you going to start a conversation, especially as a guy, you know? No. Or you’re at a school and HIPAA laws, they’re great, but they don’t preclude parents from talking to each other. But it casts this ambiance of you shouldn’t talk. And that drove me crazy. I. I’m like, parents want to talk, kids want to have friends. And as you get older, those opportunities dry up.

David Hirsch: Absolutely.

Jerry Rakfeldt: So we had talked about it and it came to a point where the business was doing well, was able to put it together, acquire building. And our vision at the time was simply we’re going to run a building. And we sort of launched it in early 2021. So we got some initial, we call them providing partners, whatever, who would run like a basketball camp and PT and ot. And that’s sort of how we started. But along the way we realized that it’s just easier for us to have a little greater control. And also Covid also hurt my own business, which is theatrically related, so it needed to not lose money. It was meant to be a four loss project and it could not sustain itself as a four loss project anymore. So we had to look at it differently and we started running our own programs and that’s working with the regional center. We got a vendorization for running summer camp, which is running now. We got a vendorization for what we call hobby classes, which is hugely popular. And now we have a new vendorization for adaptive skills which we’re slowly launching. I think that’ll be it. And then we still work with providers, but the majority of our, our revenue, because we’re not Funded. We don’t get fundraising to run the programming, we do it. And that’s sort of how Adrian’s place has come. And now. Now it’s a. It’s a thing. It is a thing. We work with a couple hundred families a year. Regional centers know us.

David Hirsch: What age range are you appealing to?

Jerry Rakfeldt: 13 and over and 17 and over as Adrian gets older. But we’re not dealing with the youngins. Our focus is peer to peer, peer to peer amongst themselves and peer to peer with all of our amazing high school volunteers who work and plugs out to Loyola Marymount, Loyola or Santa Monica High School, Harvard west, like all the schools down there.

David Hirsch: So one of the thoughts I had was what type of advice would you have for a young dad who finds himself in that situation with a child that was born with

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David Hirsch: a disability from the get go or maybe was diagnosed of down the road, like yourself?

Jerry Rakfeldt: I think that dads face a special challenge, and that is we aren’t communicative by nature. We’re certainly less so. And we don’t build our social networks and in many respects we’re overlooked. Even though I’m deeply involved in everything. It’s my wife, my wife, my wife. But my wife doesn’t do anything without my involvement. So to find. Find a community or a support network for yourself would be amazing. Now that’s actually hard. I haven’t even done that. I’m proud of what we created. It impacts a lot of lives, but I try not to delve into my emotions about it. So that’s really a dichotomy of sorts of how to approach it.

David Hirsch: Yeah. Well, thank you for your transparency and authenticity. What I think I hear you saying is that there’s a reluctance because there’s not a lot of safe places for dads to have these type of conversations face to face in particular. Right. Like on a periodic or ongoing basis. And I would love to talk with you outside the context of this conversation about the Mastermind group, which is a program that we piloted six years ago where we get dads meeting virtually on a weekly basis with a format and some structure so that it provides a safe place for guys to have these meaningful conversations. And then we get them together once a year at an annual weekend retreat and it’s very powerful.

Jerry Rakfeldt: Right, that sounds amazing.

David Hirsch: Yeah. So I’m wondering if there’s anything else you’d like to say before we wrap up.

Jerry Rakfeldt: Well, I just want to thank you for. I hadn’t heard of this. That you yourself have taken on this mission of yours and to try to again bridge that gap and support the fathers out there who were part of the equation. But we’re not given the same level of support that the mothers would typically have. So thank you.

David Hirsch: Yeah.

David Hirsch: Well, let’s give a special shout out to this mutual friend of ours, Clayton Freck, founder of Angel City Sports, who was featured in Episode 7 of the Special Fathers Network Dad to Dad Podcast a mere 440 episodes ago for helping connect us.

Jerry Rakfeldt: Yes. And yeah, to meet meeting him in a hardware store years ago. You never know.

David Hirsch: If somebody wants to contact you, learn about growing side by side or Adrian’s Place. What’s the best way to do so?

Jerry Rakfeldt: Go to the website, reach out Adrian’s Place info at Adrian’s Place. Gary at Adrian’s Place. That’ll all be fine.

David Hirsch: I’ll be sure to include that information in the show notes and I’ll make it as easy as possible for somebody to follow up. Jerry, thank you for your time and many insights. As a reminder, Jerry is just one of the dads who’s part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own, Please go to 21st centurydads.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 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, Jerry. Thanks again.

Jerry Rakfeldt: Thank you so much. Dad to the dead.

David Hirsch: You’re not on your own.

Jerry Rakfeldt: We walk this road together, hard and whole.

David Hirsch: 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 21st Century Dads.

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 the dad

David Hirsch: to dad Podcast theme was written and produced performed by Shane Madden. The show is produced by me, Tom Couch. Tune in again next week for another intriguing conversation on the Special Fathers Network Dad to Dad Podcast.

Jerry Rakfeldt: Through every season, in every stride, great dads are present. 247-365-24-7365.

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