Our guest this week is Eric Jorgensen of Frederick, MD a retired Navy veteran, widower, founder of True North Disability Planning, cancer survivor and father of two, including a son with Autism.
Eric and his wife, Christine, were married for 12 years before, very sadly, she passed away in April 2012, after a short battle with HLH (Hemophagocytic Lympho Histiocystosis), a rare autoimmune disease. They are the proud parents of two; including William (23), who has Autism, is non-verbal with learning & intellectual disabilities, and mental health challenges.
Eric reflects on his 20+ years in the Navy and work aboard submarines as well as his more recent battle with cancer. He also talks about his frustration navigating the world of disability resources that lead to creating Spectrum Needs Navigator, which starting in 2020 lead to creating True North Disability Planning, a company whose mission is: to make Disability Planning accessible to all.
Eric also publishes a weekly newsletter entitled: Waypoints and is the host of the ABCs of Disability Planning podcast.
We’ll hear Eric’s story and how he found his calling to help families invest in their future. That’s all on this episode of the SFN Dad to Dad podcast.
Show Notes –
Email – firstname.lastname@example.org
Website – https://truenorthdisabilityplanning.com/
Podcast – https://podcasters.spotify.com/pod/show/abcs-disability-planning
LinkedIn – https://www.linkedin.com/in/eric-jorgensen-true-north-disability-planning/
The Arc of Montgomery County –https://thearcmontgomerycounty.org
Tom Couch: [00:00:00] 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.
Eric Jorgensen: I would hear people, specifically people with disabilities, say I don’t like the term “special needs.” Families will still search for special needs, but I wanted to be respectful. If somebody says, I don’t like you calling me “dude,” are you gonna keep calling them “dude”?
Tom Couch: That’s our guest this week, Eric Jorgensen. Eric is a podcast host and investment advisor and the father of William 23, who is autistic, non-verbal and has learning and intellectual disabilities. We’ll hear Eric’s story and how he started a business to help special needs families invest in their future. That’s all on this Special Fathers [00:01:00] Network Dad to Dad Podcast. Say hello now to the host of the Dad to Dad Podcast and founder of the Special Fathers Network, 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 conversation between Eric Jorgensen and David Hirsch.
David Hirsch: I am thrilled to be talking today with Eric Jorgensen of Frederick, Maryland, [00:02:00] a retired navy veteran, widower, founder of True North Disability Planning, a cancer survivor, and father of a son who has autism. Eric, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Eric Jorgensen: Thanks for inviting me, David. I’m looking forward to this.
David Hirsch: You and your wife, Christine, were married for 12 years before, very sadly, she passed away in April of 2012 after a short battle with HLH. You’re also the proud parent of William 23, who has autism, is nonverbal with learning and intellectual disabilities and some mental health challenges.
Let’s start with some background. Where did you grow up? Tell me something about your family.
Eric Jorgensen: Grew up, Springfield, Massachusetts was where most of the my years were spent growing up. And I would say in terms of my family, I had a less than ideal childhood. I don’t have a relationship with my parents now. By the time I was 13, I was ready to be done with them. I joined the Navy at 17 to get out of the house as a junior in high school [00:03:00] because I just wanted to get away. My mom was diagnosed as bipolar, but my therapist and some other mental health professionals I’ve worked with over the years think she was probably a psychopath, using the clinical term. And then my dad was just her servant, for lack of a better term. To give an example, he would beat us, my brother and I, to make her happy. And she was very rarely happy. So it was just easier to avoid them.
David Hirsch: Wow, that’s a lot. And I don’t want to dwell on that, but my recollection was you have a younger brother and at a very early age, what you said was that I couldn’t wait to get out there, join the Navy. And not to dwell on your parents or your dad, but out of curiosity, what did your dad do for a living?
Eric Jorgensen: A lot of, I’m trying to remember. I think he sold insurance for a while. Then he was doing credit and collections. He never went to college. So it’s a lot of lower white [00:04:00] collar kind of work. He worked a lot of part-time jobs and he’s in his seventies now, I think, or eighties, I don’t know. But he is still driving for a parts company because he just hasn’t saved enough or whatever.
David Hirsch: And if you had to reflect on a lesson or lessons learned as a result of this dysfunctional experience that you made reference to, what were the top level takeaways?
Eric Jorgensen: The biggest thing I did with my son is just making sure never physically or verbally abusive because that was something that I grew up with. I wanted to make sure I was never that way with him. I wanted to make sure I did everything I could to shore up and help him develop a strong sense of self, a strong self-confidence. Sometimes you learn more about by people that you don’t want to be like instead of people that you do. So it was a lot of, I don’t want to be like that so I’m going to try to go the exact opposite.
David Hirsch: Yeah. Now you’re talking my language. I’m not proud of this, but I wasn’t very close to my dad. My [00:05:00] parents divorced when I was six, my younger brother was five. And my mom, who was a Chicago public school teacher, raised us from my age six to 13 all by herself. And I often think the same way that you were just describing, which is you want to emulate the good role models and maybe learn vicariously through the others, so you don’t make some of the same mistakes. That’s what I heard you saying.
Eric Jorgensen: Yeah. Yeah.
David Hirsch: Anybody else, maybe through the Navy, other men that played a role in your life?
Eric Jorgensen: I’d say I’ve had mentors. I don’t like the term “father figure” because I have very strong negative reactions towards the term “family.” So I’ve had mentors that I’ve looked up to through my career where I’ve wanted to emulate the professionalism I saw in them. I wasn’t looking at them as this is what it means to be a man. It was more of, this is how to be successful in the Navy. I took it to heart because in the Navy I would change [00:06:00] duty stations every three or four years. So every three or four years you’re walking in somewhere new and you get to be whoever you want to be because they don’t know you in most cases. So you can take what you’ve learned from your previous duty station. Apply it at the new duty station. Rinse and repeat. My first boat I was a hot mess, 18 or 19 years old and chip on my shoulder. And then as I progressed through the Navy, I was able to take those mentors and really help me figure out who I am, who I wanted to be, what it meant to be, not just a sailor, but a leader, that kind of thing.
David Hirsch: So it sounds like the Navy had a pretty good and positive influence on you.
Eric Jorgensen: Yeah. I feel like it did, David. Yeah.
David Hirsch: And you mentioned a couple things. It gave you a chance to grow up, each new assignment, if you will. And there’s a lot of leadership training that takes place when you’re in the Navy, particularly as a career Navy person like you were.
Eric Jorgensen: Yeah, formal leadership training and any kind that you [00:07:00] can’t get out of a book, but sometimes it’s worth more just by the way you get put in check. It’s hard to describe for somebody who hasn’t necessarily lived it because I don’t see the same thing in corporate America. But in the middle, especially on submarines, there’s no problem being very direct and saying, you can’t do this. This is where you’re screwing up. We can’t afford for you to be messing up like this. So it is very direct, very quick, but there’s no grudges held. It is fix it and move on.
David Hirsch: Yeah. You’d like to think that it would be that way everywhere, right? No grudges held. Fix it and move on. [both laughing] So my recollection was 20 years, six months in the Navy, 11 deployments, four in the North Atlantic, a couple in the Persian Gulf, one at Guantanamo Bay, a couple that are classified because that’s just the way that things transpired. And you spent a fair amount of time in a submarine.
Eric Jorgensen: Yes. Yeah.
David Hirsch: So when you look back over your Navy career, what are a couple of the highlights, things that were, wow, I’m the person I am because of those experiences. [00:08:00]
Eric Jorgensen: Some of the things that come to mind are the level of responsibility I got as a junior sailor on a submarine. One of the first watch stations you have is you’re driving this multi-billion dollar vessel underwater with nothing to look in front of you. You’re just driving this thing. And then just qualifying rig for dive, which means I go around, make sure everything is shut the way it should be because if you fail, the entire ship could be lost. So there’s a lot of responsibility at an early age, early rank.
It had an impact on me. It’s like, okay, I am worth something. If they’re trusting me to do something like this, I’m obviously not the mess up that… Growing up I would hear, wish you’d never been born, you’re the biggest mistake, and things like that. Having that perspective of, oh wow, they trust me to do this. And okay, even if it’s because we don’t have the manpower to watch what you’re doing, we’ve gotta believe you’re gonna do it. They train you and stuff. They don’t let you do something without training. But it does, it just built my confidence.
And then I’ve [00:09:00] learned I don’t necessarily like leading people. I don’t have the patience. It is not that I can’t delegate. I don’t necessarily enjoy developing people because in my experience, I’m good with people that want to be developed. I’m good at working with people that want to get better. You don’t have that option though. When you’re put in charge of people, you don’t have the option of saying, I only want the people that want to get better. You get everybody [David laughs] And I just don’t have the patience for the people that are happy with status quo or worse, lazy and don’t wanna do anything. But I needed to learn that too because that’s part of don’t go for a management job, Eric!
David Hirsch: Yeah. Two very important insights. The confidence you get by being handed responsibility maybe at an earlier age than you would’ve anticipated. You know what you like and what you don’t like about interacting with individuals. In a perfect world, we’d only be surrounded with individuals that were highly motivated and like-minded. [Eric laughs] [00:10:00] But life is like a bell curve distribution of outcomes. And this side of the bell are the motivated ones; on this side of the bell are the ones that aren’t very motivated and it gets worse than just not being motivated. It’s like being apathetic or just downright lazy like you said.
So anyway, thank you for sharing. Very insightful. I’m curious to know, how did you and Christine meet?
Eric Jorgensen: [Eric laughs] At a bar. [David laughs] I think that’s the story for so many sailors, right? I was stationed in Connecticut, so I would go down to Westover Air Force Base in Chicopee, Massachusetts. And back then they would allow – this is before 9/11 – they would allow civilians on base and they would have bands or whatever and cheap alcohol and we would go and dance and hang out and that’s where I end up meeting her and then just started hanging out with her on weekends and things progress as they do.
David Hirsch: That’s fabulous. I love that story. [Eric laughs] Reminds me a little bit of like a Top Gun type of situation, right? [Eric [00:11:00] laughs heartily] So my recollection was that you have a BA and a Master’s degree and you also got your CFP. And I’m wondering when you were finishing up your education, the formal part of your education, not the work experience, where did you think your career was gonna take you beyond the Navy?
Eric Jorgensen: I didn’t really know. I got most of my education after I retired. I got my BA when I was active duty because I thought I wanted to get into an office job somewhere. BA Beltway Bandit is what we called it. You basically go work for a defense firm. You take a clearance and you go work for a defense firm. And then after my wife died and I ended up deciding to stay in Maryland, that’s why I became a financial advisor. Pursued my CFP. Got my master’s in Finance, got an MBA. And after Chris died I just got into more of a reactive phase and not really, what am I gonna do? Because after she died… I was supposed to retire in June; she died in April. I got [00:12:00] extended till December, but that still only gave me eight months to get my stuff together.
So I decided to try financial services and then I bounced around financial services and ended up eventually just starting my own firm. But it just felt very like, build a boat out of newspaper and throw it into a river and just watch it bounce around. That’s how it felt. And early on I hired a coach and the coach helped me figure stuff out, which is what led me to getting the business. But I really needed somebody to talk through this with. And that’s where the coach came in because I thought I had it all figured out until my wife died. And it was just like well, crap.
David Hirsch: Yeah. Very sad to hear that she died at such an early age and after just a dozen years or so of marriage. And all of a sudden, here’s the expectation that I’m gonna retire. Lots of different opportunities, and all of a sudden, your world collapses around you. You’re gonna have to take full responsibility for your son, who you probably had a limited relationship with all the deployments [00:13:00] that you talked about. And then you’ve gotta figure out your career on top of that. And it’s a lot. And if that wasn’t enough, more recently you had your own scare with cancer.
Eric Jorgensen: Yeah.
David Hirsch: What was that all about?
Eric Jorgensen: I think I would use something a little stronger than a scare, because when I hear scare it’s oh, maybe it was a false positive. I was diagnosed with a stage two melanoma, nodular melanoma on my face. The VA dermatologist and the VA nurse practitioner, in their combined experience they’ve only seen one or two of these because they’re a very aggressive form of melanoma. And they told me that I needed to pursue treatment outside of the VA because they didn’t think that I would survive if I waited for the VA to treat me.
So it was a bit scary. And then you go to Google and you Google what nodular melanoma means and it doesn’t give you any better news. So I was fortunate enough that I [00:14:00] was able to be seen by Hopkins. So from the time I got my initial diagnosis till I got surgery, I think it was three to five weeks. It was really, really fast. That whole period is a whirlwind. And it was all during, it all happened right around COVID time, too. So I had my surgery on March 20th where they literally removed the left side of my face. So if you could draw an imaginary line from the bottom of your ear to the bottom of your lip, everything above that came off. So I have some scarring that most people can’t see. I see it because you’ve lived with it, right? But they went underneath the eyelid and they took off the left side of my face. And I was fortunate enough that I didn’t have any remaining cancer. They took two lymph nodes out. Both lymph nodes were clear. So I was able to avoid getting chemo and avoid radiation and just have the, in air quotes, just have the surgery. The surgery was, it was intense. It was a six and a half, seven hour surgery. And then they [00:15:00] sent me home right afterwards because it was safer for me to go home than be in the hospital during COVID.
David Hirsch: Wow.
Eric Jorgensen: Yeah, it was intense.
David Hirsch: Our listeners can’t see you like I can see you. We can see one another for this interview. And at least from a distance, it’s not noticeable. That’s a testimony perhaps to the great job that Johns Hopkins did from a surgical perspective. And I guess I’m wondering what is the biggest takeaway from that cancer experience that you’ve had? What’s the big lesson?
Eric Jorgensen: There’s two. The first one it’s almost silly, but see something, say something. So I had noticed something on my face back in 2019, I think. And I ignored it. My brother said something about it. I’m like yeah, I’ve got a scheduled… because I would have a scheduled dermatology appointment once or twice a year, and I was just gonna wait for it. I got lucky. It could have very easily gone the other way. I’ve known people that – I know of, I don’t know any personally – that have gotten a diagnosis of melanoma [00:16:00] and died really quick. So if you see something unusual, get it checked. So I think that as men we tend not to do that. Not just melanoma. If we’re not feeling well we tend to tough it up. And I would just encourage guys or any listener not to tough it up. You have to put yourself first so you can provide for anybody else.
The other thing is, not that I needed another reminder, but life is finite. It was really while I was recovering from my surgery that I decided to reincorporate and to rebrand my company and call it True North Disability Planning and incorporate it and make it from a hobby to a career. I don’t want to pass any more opportunities up. I’d much rather see where this is gonna go. It also led to me… I’ve been dating a woman for a few years now. We’re engaged so, you know, move that along. It reminded me just how precious life is. Not to sound like a Hallmark card, but…
David Hirsch: Yeah. Thanks for sharing. First of all, congratulations on the engagement. That’s [00:17:00] exciting. And as it relates to the two lessons, the takeaways, see something, say something. You didn’t use this phrase, but it’s what I think I interpreted, which is you need to be self-ish; take care of yourself before you can be self-less to be able to take care of other people because if you’re not healthy, if you’re not here, game over.
Eric Jorgensen: Yeah, that’s a really good way to put it, David.
David Hirsch: Life is finite. Maybe as we each get older, we know that there’s less time ahead of us than perhaps behind. And this shock that we all get at some point in our lives with a diagnosis of consequence like you were just describing, is a big wake up call. And I’m just thrilled to hear that one of the outcomes of this was the rebranding, rethinking about the work you’re doing. And we’ll get to that in a few minutes.
So let’s talk about disability on a personal level as a father, and then we’ll talk a little bit about it beyond. [00:18:00] So prior to William’s diagnosis, did you or Christine have any connection to the disability or special needs community?
Eric Jorgensen: Not knowingly. I shared my mother’s diagnosis, but I didn’t know that back then. It didn’t mean anything to me. It didn’t have any meaning. And growing up in schools there was nobody with disabilities represented. I think I might have seen one person who was blind in summer camp or something, but nothing of consequence.
David Hirsch: So what is William’s diagnosis and how did it come about?
Eric Jorgensen: So his primary diagnosis is autism. He got a neuropsych eval when he was three when they diagnosed him with PDDNOS, pervasive development disability not otherwise specified, because they didn’t want it… Back in early two thousands, they didn’t want to give him an autism label. So they waited until he was five to go ahead and label him as autistic. And then over the years he’s picked up diagnoses for Tourettes, [00:19:00] learning disabilities, intellectual disability. And then he had what’s called pectus excavatum. So his sternum was pushing against his heart and his lungs, and that wasn’t diagnosed until after my wife died. In 2017, he had a titanium rod put in his chest to push his sternum out. And they took that out in February of 2020, the month before I had my surgery.
David Hirsch: Wow.
Eric Jorgensen: Yeah.
David Hirsch: Sounds like this young guy’s been through a lot.
Eric Jorgensen: Yeah. Yeah.
David Hirsch: So going back to the time of the diagnosis, I guess starting at age three to five, when there was a diagnosis and then it was confirmed that it was autism, what were some of the fears that you faced as parents?
Eric Jorgensen: If I’m being transparent, I think I was in denial and I just let Chris handle everything. She did all the research and she just told me we need to get William to speech therapy, occupational therapy over and above [00:20:00] whatever early childhood and school was giving him. So I just followed her direction. I don’t really remember being too involved because she was living in Massachusetts. I think I was living in Connecticut. And even when I was living with her, when she moved to Connecticut, I was gone a lot, so I just let her handle things.
I’m sure I was in denial because it wasn’t until a few years ago when I hired an advocate because I didn’t agree with the school telling me that he needed to stay in until age 21. I wanted him to get a high school diploma, so I hired an advocate to fight on my behalf. And the advocate told me, no, the school is right. I think that was when I finally processed it. And that was when he was what, 11 – or no, Chris died when he was 12, so he had to be 13 or 14 – when I finally just said, okay, he is disabled.
David Hirsch: Thank you for your transparency. It’s not the first time I’ve heard a dad reflect looking backwards and [00:21:00] say, I wasn’t part of the solution. I could have been or should have been more engaged. And I think a lot of us, I’ll point the finger at myself, one of the common phrases I would say as a younger dad is “we’ll cross that bridge when we get there.” Let’s not pre-worry our worries. That’s the way I was wired or maybe still am wired. And maybe that’s a good trait in certain respects, but when taken to an extreme, when we’re talking about raising a child or raising a child with disability or special needs, you’re not availing yourself or your child of the therapies that they might benefit from. And the unintended consequence is there’s further delays. And I really admire your honesty and openness about it.
So what I think I heard you say, that you hired an advocate and the advocate was the one that helped you look at the situation [00:22:00] objectively. So that was some pretty meaningful advice that you got at around age 13, William’s age 13. I’m wondering if there’s any other advice, either before then or maybe subsequently, that comes to mind that was pivotal.
Eric Jorgensen: I don’t know if it’s advice; maybe collaboration. I moved from Silver Spring, Maryland to Frederick, Maryland to get my son in a program called Success because he had been in a Learning for Independence program and I felt like it was just glorified daycare. And when I brought him up to Frederick, they were much more involved with… It’s still life skills, but it’s more functional. Like they were teaching him how to cook with real food, and he would do a budget. And so it was more collaborating with them and saying, your child, William is much more capable. And I thought he was capable. I just wasn’t… there was nobody to work with me on helping him be more independent.
And it culminated in right before COVID [00:23:00] with him saying, I don’t want to take a school bus anymore. I’m not a child. And he advocated for himself with the school and worked out with the school and myself how to take public transportation to get from my house to the school. And to do that, he had to take a bus downtown, get off that bus, transfer to another bus to get to the school. I mean, that’s a lot of steps, especially for an individual with disabilities like learning disabilities and autism.
But he wanted it bad enough, so we put the app on his phone so he didn’t look different. Everybody uses the app on their phone, so he fit right in. Nobody really wants to talk on the bus, so he wasn’t unusual for sitting there and just staring out the window. It just made him feel like he could do what he wanted. And right before COVID it got to where he would go and take rides on the bus just to go. So it really opened up his world. It gave him that independence.
David Hirsch: Yeah, that’s exactly what I heard you [00:24:00] saying is that he didn’t want to ride a school bus, he wanted some independence. And you don’t know that your child is ready for that. But it’s not something you can push him to do. It was something that he was motivated to do. And I think that anytime that we can identify what motivates our kids, typical or atypical kids, for that matter, then we’re playing hopefully to their strengths and something that is gonna get them up and off the couch or out the door.
We were talking earlier about managing people. Some are motivated and some aren’t. So it’s our job as dads, as parents, for that matter, to figure out where’s the fire burning? What’s gonna motivate them? And sometimes it’s easier said than done. So I just wanna say thanks for sharing that. And not to focus on the negative, but what have been some of the biggest challenges that you faced related to William’s condition?
Eric Jorgensen: My patience. My lack of empathy, perhaps, where… I feel that I should probably be more patient and understanding, and I’m just not. I believe he’s [00:25:00] depressed. I believe he’s battling that kind of stuff. It doesn’t stop me from wanting to just pick him up and throw him outside. I don’t do that. I don’t do that, but I struggle with being patient and letting him take things at his pace. So we have staff now, and the staff is a very good buffer between him and I. Because the staff is a good advocate for William, and the negative interactions between William and I have decreased.
I have a very strong aversion to touch unless I’m expecting it. And there have been times where William has attacked me. And there’s been at least one occasion where I just lost it and put him on the ground. So, you know, not proud of it. So I do everything I can to minimize interaction.
David Hirsch: Okay. There’s a lot there. I don’t know that I want to unpack it, but you’re very [00:26:00] transparent about your situation. Your patience or lack thereof, lack of empathy, recognizing that he is probably dealing with depression, and you’ve been able to bring in some outside resources. The staff as you’ve made reference helps to be the shock absorber or the buffer, so that you’re not butting heads directly as often. That’s what I think I heard you say.
Eric Jorgensen: Yeah.
David Hirsch: It sounds like a pretty challenging situation on a day-to-day basis. Have there been some turning points? Something you can look back and say in addition to the staff, for example, that has put both of you on a better trajectory than perhaps some of the ground that you’ve traveled?
Eric Jorgensen: I wish I could say there was, but no. I’m looking now to find… either get him an apartment or building an addition. This is not sustainable. I wish I had a better story, David. I really do. My fiance doesn’t come over because she gets concerned sometimes about her safety. I’m working on turning another room [00:27:00] into an… he took over the living room and he sleeps down there now. I have a split level, so the basement was the living room and he’s taken that over as where he sleeps and stuff. So I’m working on turning his bedroom into a new living room, so she and I can at least have somewhere to hang out. But she hasn’t been over to the house in a few months.
David Hirsch: [heavy sigh] Well, from your lips to God’s ears, I’m hoping that you can identify a suitable solution, right? One for William, for his benefit, and then one that provides you with some space so that you can live as typical a life as possible, knowing the responsibility that you have for your son as well. It sounds like a little bit of a tightrope though, right? You lean too far this way or that way and you’re not where you want to be.
Eric Jorgensen: Yeah. It’s not my ideal situation, David, and if anybody can get anything out of this, that’s why I’m being transparent. I’m sure I’m [00:28:00] not the only person out there dealing with this. And if you look at social media, you’re seeing everybody’s highlight reels. So I just want people to know it’s not like that.
David Hirsch: Yeah, your authenticity is one of your superpowers, so thank you again. So I’m thinking about supporting organizations and I’m wondering what organization or organizations come to mind.
Eric Jorgensen: Early on when my wife died, the Arc of Montgomery County was phenomenal. They had a program – they have, it’s still there. My son doesn’t use it anymore. But they have a program called After All, which is designed specifically for youth over the age of 12 because a lot of places don’t have anything for somebody over the age of 12. It gets very hard to find care, anything for the child after school. So they were very, very helpful for me. They helped me learn about the Medicaid waiver in my state, learn about the other funding sources in my state. And that was really the starting point to where True North Disability Planning is now. It was really [00:29:00] the introduction to, did you know your state had this? No. Why didn’t I know about this? Why is this so hard to find out?
And then he’s had some teachers who have been really helpful for him, really strongly advocating for him. My son’s got his staff but there’s really nothing… he doesn’t want to be social. So a lot of the things that are out there for support groups and things for individuals with disabilities, he doesn’t want to participate.
I’m not a big fan of support groups, so I don’t participate in any kind of parent support group because in my experience, it just ends up me farming out a lot of advice just like I do at work all day. So I just don’t get a lot of support. I find myself giving more. And at some point I just, I want to be done with that. I want to be selfish.
David Hirsch: Okay. Thank you for shouting out, giving a shout out to the Arc of Montgomery County. It sounds like that After All program was a lifesaver at [00:30:00] that point in your family’s life. And thank God for those teachers, those angels if you will, that are there advocating for your kids. They’re not always there, right? Not everybody can say that.
Eric Jorgensen: Yeah. And I hope I’m not coming across too negative, David, because I don’t feel like a negative person. I don’t. I feel like I have a very positive outlook. So I apologize if this is coming across very negative, boohoo, poor me. I’m not trying to do that.
David Hirsch: Yeah. I don’t think… that’s not what I’m hearing is woe is me, or I need some sympathy or pity. But you’re just being very unvarnished about it, right? You’re just being objective and it’s not an optimal situation like you’ve made reference. It’s not where you want to be. It’s not where William wants to be. And hopefully as the weeks, the months, the years go by, you’re able to navigate a path that is closer to the path that you both want to be on.
And at least at this point, it feels a bit raw, right? That’s what I hear you [00:31:00] sharing. And I think guys need to be reminded, if you find yourself in the situation or something that has some facets to the story that you know we’re talking about here, that’s okay. Hopefully this is a phase and that there’s a place that you’ll find yourself in down the road, hopefully not a long time down the road, that is gonna be one that you’re more enthusiastic about than the place you find yourself in today. And you’re a person, just based on your military experience and training is you have to deal with reality, right? And the world is not a happy-go-lucky rainbows and roses type of place. And it takes a certain amount of perseverance, commitment, endurance to get through these rough patches. And I’m cautiously optimistic that you’ll figure that out just based on your level of commitment.
Eric Jorgensen: Thanks, David. I believe this is a season and I do want to put a plug [00:32:00] in here for therapy. I’ve been seeing a therapist for a while. When you’re going through stuff like this, the worst thing you can try to do is figure it out on your own.
David Hirsch: Yeah. We are the gender that doesn’t pull over and ask for directions when we’re lost. So I think that just your acknowledgement that it’s helpful to get some feedback to get some of this stuff out of your mind and off your chest and to be able to talk about it, look at it, put it in perspective. And that’s part of the solution, is not trying to figure it out all yourself. And I applaud you for that.
Tom Couch: We will 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 [00:33:00] dad, who completes the survey will receive a Great Dad Coin. Thank you. Now back to the conversation.
David Hirsch: So let’s talk about the work that you do. Starting in 2017 if my notes are correct, you created something called the Special Needs Navigator. And I’m wondering what is or was that, and what was your purpose behind creating that?
Eric Jorgensen: Back in 2017 when I started it, it was my way of starting to give advice to parents that was more about what they should be doing to help them get the support they need for their child when the child leaves high school and less about what I was doing as a financial planner with retirement planning, college planning, risk management. All that was important, but I wasn’t… There was no way in a traditional financial plan for the companies I was working for, there was no way for me to neatly say, did you know about this for [00:34:00] your Medicaid waiver? Or have you applied for SSI? Or do you know about Medicaid, Medicare? There was no real clean way for me to do that. So I started Special Needs Navigator. And then that just morphed over the years as I got more and more involved. I started just doing Maryland because that was the state I was most familiar with because that’s what I was dealing with. And it came out of a place of why is this so hard? Why is this information not being fed to us or pushed to us to use a technology term? Why do we have to go out and ask for it, and how are we supposed to ask for it if we don’t know what we’re supposed to be asking for? So that’s what led to all of this starting.
David Hirsch: So was it an online tool or was it a document?
Eric Jorgensen: Back then it was really just a way for me to work with the clients I was working with. It was a hobby. I wasn’t charging for it, and it was really just giving advice to [00:35:00] people that I was already working with as a financial planning client. And it was probably… I don’t remember, but I’m sure it was probably a way for me to get more financial planning clients because that was the world I was in back then.
David Hirsch: So was it in 2020 that you shifted from being focused on being a financial advisor doing financial planning and then putting your heart and soul into this recast version of what we’re talking about today, which is the True North Disability Planning?
Eric Jorgensen: It wasn’t that black and white, but I was really getting disillusioned with financial services in the sense that I couldn’t do what I wanted to do. In 2020 right before my surgery, I had joined a financial firm as a “consultant.” I still had all my licenses and I was still on a handshake agreement to refer him business. So I had minimums I had to meet every quarter to refer to him. It was a handshake deal, so it wasn’t like hard and [00:36:00] fast, but I was still under that production mindset of I’ve gotta get financial planning clients.
And then after I got my surgery I was like, I’m done. I just do not… it just wasn’t what I was passionate about. There’s plenty of really good financial planners out there. Nobody doing what I’m doing the way I’m doing it. It needs to be done. I rebranded because over the years from 2017-2020, I would hear people say, specifically people with disabilities say, I don’t like the term “special needs.” Families will still search for special needs, but I wanted to be respectful, right? If somebody says, I don’t like you calling me “dude”, are you gonna keep calling them “dude”? So I was trying to be respectful of what I was hearing and that’s why I rebranded from Special Needs Navigator to True North Disability Planning. If anybody looks, I’m still licensed in the state of Maryland. I’m still incorporated as Special Needs Navigator. I’m just doing [00:37:00] business as True North Disability Planning because changing a whole LLC is much, much harder than doing business as.
David Hirsch: Well, thank you for the insight. What is your primary focus today in the name of True North Disability Planning?
Eric Jorgensen: My primary focus today is helping professionals who want to serve families with disabilities get the information they need to serve their families. I’m available for families. If they have questions, they can hire me. But I’m really focused on, I want professionals who are serving families to really have the quality information that they deserve and that the families they are serving deserve. That’s really where I’m trying to get to, is push the information out to those professionals and say, look, I know there’s no other resources. I know if you’re with a big firm, your advanced planning teams, they don’t have this kind of expertise. They’re great for legal, they’re great for investments. They don’t [00:38:00] have this disability expertise.
David Hirsch: So when you say professionals, are you talking about financial professionals?
Eric Jorgensen: Financial professionals, but also family law attorneys. Because there’s a lot of states that will let divorcing couples, they’ll pay child support after the age of 18. That can affect benefits. Estate planning attorneys who want to do more for their clients instead of just saying, here’s a will and a trust. You can talk to your clients about… Yeah, you can talk to them about guardianship support and decision making, but you can also tell them when you’re doing all this paperwork with me, have you signed up for your state Medicaid waiver? Just giving them, telling them there’s something else to look for. I’m not asking you to do it for them, but tell them there’s one more thing to look for. You’d be amazed how much of a difference that can make.
David Hirsch: Absolutely.
Eric Jorgensen: You probably wouldn’t, but…
David Hirsch: I know what you’re saying though is that there are resources out there and there’s a big disconnect. And what I hear you saying is that you’re meeting an unmet need. That’s what [00:39:00] I hear you saying, which is you’re trying to educate professionals who aren’t trained in this area to know where the resources are and not, like you said, do this for their clients, but to point their clients to the resources that they would benefit from.
Eric Jorgensen: I have things that families can use. I have the roadmaps. Because my intent is to let other organizations white label those roadmaps. But the families can access them if they want to get them from the website.
David Hirsch: Got it. Thanks for sharing. And one of the things that you’ve been doing for a couple years is your own podcast in the name of the ABCs of Disability Planning podcast.
[Audio excerpt from an ‘ABCs of Disability Planning’ podcast]
In business and in sports, you want to be in the top. You want to really be one of the few and really be out there setting the bar That’s not the case when it comes to disorder, disability, or syndrome. When you have a rare disease or a rare diagnosis, it can be isolating, it can be scary.[00:40:00]
And today I have with me somebody who’s lived that and not only lived it, but she started a whole movement around it. Jill Kiernan is the founder and executive director of Tatton Brown…
[End of audio excerpt]
Let’s go back to the very beginning when you first put yourself in front of a mic. Was it just you talking, sharing information? Did you always have this vision of interviewing people? What was the original experience like?
Eric Jorgensen: I always wanted to interview people because it came about once again of why don’t people know all these organizations exist? You can’t watch TV for more than half hour, 45 minutes before there’s a drug commercial saying, if you have these symptoms, ask your doctor about dot, dot, dot. But there’s nothing for families who have children with disabilities to say, are you experiencing this? If you are, ask your case manager about dot, dot, dot. Instead it’s the other way around. The case manager comes to you and says, Mr. Jorgensen, what type of help do [00:41:00] you need? I don’t know! How about telling me some ideas? What I should… There’s so many cool organizations out there. There’s just so many companies that are doing amazing things. And that’s what I’m trying to do with my podcast is I’m going out and finding these companies that are disability agnostic, but they’re serving at a national scale. And families can say, I want to know more about… I’m looking for an organization that offers short-term rentals for people that use wheelchairs. There is a company out there doing that, but you’d never know to look if you didn’t hear about it. Because more often not, in my experience, the default is, oh, that probably doesn’t exist, instead of let me go try to find this. Because as parents, and again this could be my own bias, we’ve just been beaten down by nothing’s ever available or nothing’s ever easy. So that was really… And I went on a bit of a rant, David, I’m sorry. But that was why I started the ABCs of Disability Planning podcast is because [00:42:00] I want to be that resource for people to say, did you know this existed? If you did know, did you know it could do X, Y, and Z? And if you didn’t know, maybe you should check them out.
David Hirsch: Yeah. I’ve listened to some of your podcasts. They’re very informative and you’ve covered a really wide range of topics, so I want to encourage you to continue doing that. And along the way, I think it was more recently, you’ve started a second podcast called The Bullied Brain Podcast with a co-host Jennifer Fraser. What’s that about?
Eric Jorgensen: That is a little bit of a darker podcast. So Jennifer Fraser is the author of The Bullied Brain, healing your brain through trauma, after trauma. And what we’re doing for the first season is we’re unpacking all of the trauma I’ve had growing up, and then she’s taking the neuroscience behind how I’ve been able to be successful for – not to toot my own horn – but how have I not ended up in [00:43:00] jail or been in the system, right? How have I been able to make it through 20 years in the military, start my own business? How I’ve come through all that. And she’s using the neuroscience to explain how people can use similar tools to what I used, by not identifying as what my parents told me I was, and being willing to fight against it and getting out of the negative environment by, for me, it was joining the Navy. I recognize not everybody has that option, but just leaving the environment can do wonders. And so we talk through that and that’s what the whole first season is about. And in later seasons, the plan is for Jennifer and I to interview other neuroscientists and other professionals to really give people more tangible how to heal themselves.
David Hirsch: I love it. It does sound a little dark though, The Bullied Brain. And has it been therapeutic for you?
Eric Jorgensen: Yeah it has. It’s been cathartic, embarrassing sharing some of the things that I’ve shared looking [00:44:00] back. And I’ve really questioned if I wanted to publish certain episodes because it doesn’t paint me in a very good light.
David Hirsch: Yeah. Again, one of your superpowers is your transparency. And most of us, I’ll just speak for myself, aren’t comfortable airing their dirty laundry. And I think you’ve owned that, right? And you’re a better person for it and you’re able to inform others, right? And I think that again, that’s one of your strengths. I wish you continued success with that.
Eric Jorgensen: Thank you, David.
David Hirsch: So I’m thinking about advice and I’m wondering if there’s any advice that you can provide parents, maybe more specifically dads, who find theirselves in a challenging or overwhelming situation?
Eric Jorgensen: I think first and foremost, I would say it’s almost never as bad as you think it is. Short of a terminal diagnosis, there’s nothing you can’t come away from. And don’t do it alone. I’ve shared I have a therapist, even if I don’t necessarily have a huge team. My [00:45:00] fiance has been a huge rock for me. I’ve got a business coach for my business, but I also have a therapist for my personal mental health, just because I’m not a big fan of support groups and teams and things like that. And a lot of that’s because of what happened to me in my upbringing. Don’t take that as prescriptive. David, you were sharing that you’ve got groups that meet two or three times a week, and they really commit to being there for each other. So I would encourage people to try that out and see if it works for them.
David Hirsch: Yeah. Pearls of wisdom. So I invite you to join our Mastermind group, not for one night, but maybe week after week. And see if that takes you anywhere. I think what you were saying is that you do need to come in not just thinking, oh, I’ll just kick the tires once, but making a commitment, right? Because it’s gonna take a while until maybe you feel comfortable opening up and being part of [00:46:00] what’s involved. And there are some exceptions. I’ve actually had guys say, oh my gosh, this is exactly what I’ve been looking for. I’ve been looking for years and years. I’m so thankful I found you. And those are some of the most effervescent members of the Special Fathers Network Mastermind groups. But for the others, there was that warmup period. I don’t know if it’s just a couple weekly meetings or if it takes a month or more, but you’ve got a pretty good read on how guys think about things and the obstacles that we have to overcome. So thank you for sharing. So I’m wondering if there’s anything else you’d like to say before we wrap up.
Eric Jorgensen: I appreciate this, David. I appreciate you giving me an opportunity to share my story. I told you before we hit record I wasn’t sure how helpful it would be because I certainly don’t see it as being inspirational. I feel like I’ve made more mistakes than I have as a father. I [00:47:00] feel like a lot of my life, I’ve prioritized my career over being a parent. And if somebody can learn from that, great. I just don’t think my early years are an example anybody should follow.
David Hirsch: Yeah. Thank you for sharing. Well-informed. And these are lessons that you’ve learned from your own personal experience and hopefully others can take the good parts of what you’re talking about, emulate those, and maybe take the more sobering aspects of what you’ve shared to heart so that maybe they don’t put as big a priority on their careers early on. Again, that was one of the takeaways.
Eric Jorgensen: Yeah.
David Hirsch: So let’s give a special shout out to Marsh Naidoo of “Raising Kellen” for helping connect us.
Eric Jorgensen: Yeah, she is awesome! I love her podcast, too.
David Hirsch: Yeah, she’s a great podcast host. I just love her heart and just very grateful for her making the introduction. So if somebody wants to learn more about your work [00:48:00] or to contact you, what’s the best way to do that?
Eric Jorgensen: The website, truenorthdisabilityplanning.com. That’ll have links to everywhere. It’ll have links to my social media, it’ll have links to my podcasts, both of them, my YouTube channel, all of the content I put out, you can get to from the website.
David Hirsch: We’ll be sure to include that in the show notes so it’ll make as easy as possible for somebody to follow up with you. Eric, thank you for your time and many insights. As a reminder, Eric 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 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 organization, which means we need your help to keep our content free to all concerned. Would you please consider [00:49:00] making a tax-deductible contribution? I would really appreciate your support. Eric, thanks again.
Eric Jorgensen: Thank you, David.
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 [00:50:00] 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.