061 – Jason Lehmbeck’s son Noah has Fox-G1, a rare genetic disorder.
On this Dad to Dad podcast host David Hirsch talks to Jason Lehmbeck a father of three children, including Noah, who was diagnosed with Fox G1, a rare genetic disorder. We’ll hear about Jason’s family and his career, including the founding of team Special X, helping parents get the best care for their children with special needs. That’s all on this Dad to Dad podcast, presented by the Special Fathers Network.
Dad to Dad 61 – Jason Lehmbeck’s son Noah has Fox-G1, a rare genetic disorder.
Jason Lehmbeck: Have a 911 call list when you’re going through these darker moments and basically just have a list of people where you ask their permission to call them. When you’re going through these dark moments, let’s use our resources to see if we can take technology and enable and empower or people who are doing amazing work in this world to do even more for these kids.
Tom Couch: That’s Jason Lehmbeck father of three, including Noah age 11, who was diagnosed with Fox. a rare genetic disorder. Jason’s our guest on this data dad podcast. We’ll hear about his family and career, including the founding of team special X, helping parents get the best care for their children with special needs.
Here’s our host 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.com
David Hirsch: And if you’re a dad looking for help for. We’d 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: Let’s listen now to David Hirsch’s conversation with special father Jason Lehmbeck.
David Hirsch: I’m thrilled to be talking today with my friend, Jason Lehmbeck. Of Los Angeles, California. I’m a father of three tech industry veteran co founder of CEO of data, pop a pioneer in the digital ad space and founder of special X, whose mission is to help children with special needs reach their full potential.
Jason, thank you for taking the time to do a podcast interview for this Special Fathers Network.
Jason Lehmbeck: I appreciate the opportunity. I’m really excited. I’m a solicitor of the show, so I’m glad to be on.
David Hirsch: You and your wife, Leah had been married for 16 years now. The proud parents of three boys, Isaac three, Elliot six, and Noah 11, who is diagnosed with a rare genetic disorder. Let’s start with some background. Where did you grow up? Tell me something about your family.
Jason Lehmbeck: I grew up in Tucson, Arizona, born and raised until I lived there until I was 18. And I’m one of three kids. I have an older brother, Eric and a younger sister, Jennifer and mom and dad. Um, we just actually got back from a cruise to Alaska where we had the whole family together and it was celebrating my dad’s 80th birthday.
David Hirsch: That’s fabulous. That’s one of the only times I’ve ever been on a cruise ship, coincidentally was going to Alaska.
Jason Lehmbeck: Oh really?
David Hirsch: And amazingly, everybody tells you how foggy it’s going to be and how you’re gonna have problems, you know, potentially with the weather. We did not have that at all. It was,
Jason Lehmbeck: yeah, we got lucky as well.
We had, we had one or two days of that and then the rest was just beautiful, amazing experience.
David Hirsch: Yeah. Well, what I loved about it is the multigenerational nature of it. Um, my mom, um, this was about a dozen years ago. I was able to join us and, uh, it was just a really special experience.
Jason Lehmbeck: That’s great.
David Hirsch: Excellent. So, um, your dad just celebrated his 80th birthday. It’s a blessing that he’s still alive. I’m wondering how you describe your relationship with your dad.
Jason Lehmbeck: It’s strong. I mean, he was, um, you know, he was, he was kind of in between generations, I would say in terms of fathers, uh, you know, there was definitely an old school bent to him and.
Of user of, um, corporal punishment as necessary, uh, mainly threats. We knew not to go over the line after a couple of times. And, uh, but he was also soccer coach and, you know, always home for dinner and just an amazing supportive person in my life. Not a man of many words, but when the words were spoken, it was helpful, supportive in a number of different ways, whether it was growing up in sports or school or going off to college and career he’s, he’s an entrepreneur himself.
And so I come by it honestly, and with our journey with my oldest son, he’s just been a rock for, for me and my family.
David Hirsch: Well, you didn’t say this, but the words that come to mind are disciplinarian and old school.
Jason Lehmbeck: Yeah, he is both of those, but he’s also new school. I mean, he’s the way he engages with his grandkids and with, with us, it’s been awesome.
David Hirsch: That’s great. So I’m wondering if there’s any advice you received or important lessons that you learned from your dad that resonate?
Jason Lehmbeck: Yeah, he was, he wasn’t is a person who leads by example primarily. So there are not a lot of. Easy soundbite quotes to provide on that. But yeah, he was a combination of somebody you just worked his tail off and was passionate about his job.
And you just saw that every day and what he was doing. And, you know, that was an amazing example to see somebody. You know, go to college cause he loves rocks and earth and become a geologist and then spend 10 years all over the country and in South America as an Explorer and then to start his own business.
And so just having that in our lives, growing up and seeing that that was a possibility to do something that you love and do it in a way that was enriching was a beautiful example. And then, you know, On the family side. As I mentioned earlier, just him leading by example, being there for dinners, soccer games, coaching before work, life balance was a thing.
He was doing it. And not at a time when it was easy, he was running his own business and, you know, working 60 hours a week. But somehow he found a way yeah. To be a great soccer coach and to be there at dinner when we were griping about whatever teenagers gripe about and helping us through that stuff.
David Hirsch: Oh, that’s fabulous that he was a role model by example, work ethic is what I think I heard you say more than once, you know, he was involved. He wasn’t just, you know, somebody that, uh, you know, sort of stayed at home and, you know, just pay the bills type of guy. That’s wonderful. Yeah. So I’m thinking about your grandpa’s on your dad’s side and then your mom’s side.
What role, if any, did they play in your life?
Jason Lehmbeck: So my mom’s side, we call them no-no. Uh, and, uh, he was, uh, he was definitely old school. Italian guy, uh, came here when he was 18 and, you know, classic immigrant story. He started off in a butcher and then ultimately went off and started his own cattle business and had a great success there.
And so another entrepreneur, my wife that I saw. Uh, he, he lived until I was 13. So, uh, I was, what was, it was able to build a relationship with him. And he actually lived in Tucson, uh, for the latter part of those years. And we would have Sunday suppers, uh, with known on no-no. Um, and you know, a man of even fewer words and some broken English cause uh, Italian was his first language, but, uh, Yeah, he was a cook.
And so you’d see him in my, my known as fight over. Who’s going to make the best inch mulattoes is for their little, little Tucson grandsons. And so it was just like a beautiful, I mean, he, yeah, he was there, uh, at a great time in my life and, um, Yeah, he was, but he had a temper and we bought them. We bought him cause he was in the cattle business.
We bought him boxers once, um, you know, underwear that had cattle on it and he just kinda threw it on the table and he said, what is this? I don’t know if we can curse, but he cursed. I’m like, I’m never going to wear these. And you know, the eight year old and me, it was just heart struck. So yeah, he’s just a great person in my life.
In those those years.
David Hirsch: That’s fabulous. So I’m wondering if there’s any other father figures while you were growing up or even as a. Younger dad, yourself, um, men that have played an important role in your life.
Jason Lehmbeck: Yeah, that’s a great question. I mean, the, probably the biggest other influence on that side is my brother.
He’s two years older than me. He’s got three amazing boys that are, you know, in their teenage years now. And my wife and I often talk about. What an example he has been in terms of he and his wife, how they’ve raised their children and how they’ve just raised three amazing boys. And so just kind of learning through example through him and talking to him about the challenges and the goods of, uh, of being a father has been a wonderful resource.
David Hirsch: That’s fabulous. So I, if I remember at, uh, you, um, grew up in Tucson and then you across the country to go to. School of Columbia university and New York city. And you took an industrial engineering degree. What was it that you were thinking when you graduated? What was your career planning?
Jason Lehmbeck: When I graduated, I had actually started a business with a good friend of mine in my mall, in college.
It was a web based business and that was fun. And I thought maybe I could go do that. But I also had a lot of college debt and I had visions of. Having health insurance and a well paying job to pay for the college debt. And so I, I went off and said, I’m going to get on the typical kind of career track you get on, which is consulting and go run on that track and pay off all that debt.
And I did that for a year and a half and realized pretty early into it. That was a mistake I needed to go back to startup life.
David Hirsch: So, where did your career take you then?
Jason Lehmbeck: At the time I am, I was in, I was actually here in Los Angeles, but I had a good friend who started a company in New York city. And so I moved back to New York and lived on his couch and we, we did a startup, uh, in the late nineties.
That was a dumb idea. There were a lot of dumb ideas being funded back then. And, uh, so I did that for 11 formative months of. Burning a lot of money, other people’s money and making a lot of mistakes. And, but it was, it was really interesting and formative experience. And then I went to a company called DoubleClick at that point, which was a high growth internet marketing company in the late nineties.
And that set my career trajectory for another 15 years from there.
David Hirsch: So if I remember correctly, DoubleClick went public. That was their exit.
Jason Lehmbeck: Yeah. They went public and then they sold a ultimately to Google. Which is why everybody has these banner ads and other ads floating around. So you can, you can blame me for working a double.
David Hirsch: And then, uh, did you also work in, uh,
Jason Lehmbeck: overture? Yeah, I left a week. My wife’s from Los Angeles and we really wanted it. We were in New York at the time and really wanted to come to warmer weather. And, uh, it was kind of an easy choice between Arizona and Los Angeles. Uh, I got a job with over-treat, which was based here in Los Angeles and worked there for a number of years and just had a wonderful experience.
They were, um, An internet technology company that was doing ads in search. So when you type in a word in search and you see an ad at the top, that was they, they kind of pioneered that. And so I worked there and help build out some new product lines and ultimately met my co founder in my previous company data pop there.
And we left and started data pop after Yahoo acquired overture and 2008. So is
David Hirsch: data pop something you’re still involved with or not?
Jason Lehmbeck: No, we had, it was kind of a classic startup experience. We left in 2008, which I’m sure everybody remembers was not a, not a wonderful year in the economy. And it was two weeks before Lehman went bankrupt.
And so we had left these safe jobs and went off on this journey to. Change the world. And we had an amazing experience, but a tough one for three or four years just surviving, you know, my co founder, John and I just, uh, and the team that we had were amazing, just kept going and fighting. And we found me found.
Momentum and started growing fast. And we were fortunate enough to sell that company a little over four years ago to, um, a company called Critio, which is a public internet advertising company. Uh, so yeah, that was, um, four years ago. And my involvement, uh, there stopped, uh, about two years ago.
David Hirsch: Okay, awesome.
Well, thanks for sharing. It’s fascinating. When I mentioned that you were a digital. Tech industry veteran. I wasn’t just saying that this is been your life,
Jason Lehmbeck: right?
David Hirsch: Sounds like it’s been exciting. Lots of ups and downs. I suspect.
Jason Lehmbeck: Yeah, definitely.
David Hirsch: So I’m sort of curious, uh, how did you and Leah meet.
Jason Lehmbeck: We met at Columbia.
So she was a volleyball player and I was a swimmer. So the athletes hung together because sports is not a big thing at Columbia. There were a few of us. So we became friends through that and we were friends for pretty much our whole college time. And then, uh, then we went from friends to something else and been together ever since.
David Hirsch: So you might say the rest is history.
Jason Lehmbeck: Yeah, that’s right.
David Hirsch: It wasn’t an art history
Jason Lehmbeck: She, yeah, she is a she’s art history major. Got her PhD in art history. And she now works at, uh, the LA County museum of art, which was her growing up with her. Museum and was kind of her dream since probably her teenage years of working there.
And so she’s, we live around the corner and she gets to walk to work when there isn’t kids school drop off and still hanging out with art.
David Hirsch: That’s awesome. Thanks for sharing.
So let’s talk about the special needs community on a personal level and then beyond. So I’m sort of curious to know before Noah’s birth, did you or Leah have any connection to the special needs community? No.
Jason Lehmbeck: No, we were, um, yeah, we were actually thinking about that the other day. No, this knows their first real.
Connection in any way.
David Hirsch: So what was it like when you learned about Noah’s diagnosis? How did things transpire?
Jason Lehmbeck: Yeah, he was, Noah was our first child. And so, you know, in hindsight, we should have recognized something was up within a couple of weeks. We didn’t really. Realized something was different until a month or so in, uh, he wasn’t hitting the, the typical milestones tracking and turning to, to hear, um, our voices.
And we had this amazing pediatrician, dr. Raker, who, when we met her at the two month Mark, she said, I don’t know what’s going on here, but there’s something going on and you need to reach out to the regional center, which is a California based system that supports people with disabilities. And so we started down the journey basically at that two month Mark and.
It took us four years to actually get his diagnosis. So it was four years of running from specialist to specialist and provider to provider, trying to figure out what can we do to help our son in any way that we can. And it was very stressful and grief, ridden process, uh, trying to do all, all that we could to help him reach his full potential.
David Hirsch: So what were some of the, um, challenges or situations early on during the first four years while it was undiagnosed officially?
Jason Lehmbeck: Yeah, the biggest one. And you know, this is not, this is a dynamic thing that presents itself in different ways over time is the, the loss of, uh, What we were expecting, uh, Noah to be in and what he could be.
And, um, so that grief that we went through and sometimes still go through is, um, you know, just knocks you back and just deeply emotional ways. And you know, at that time, that’s right around when I started our companies. So I had this, I had a startup that was going through its own thing. And then I had this beautiful boy who I couldn’t figure out.
How to help him and, and help him, you know, be who he could be. And so that was, um, that was the biggest. Issue stressor that we faced is just, you know, I can’t, I don’t, I’m a problem solver and, and, and Noah’s Noah’s problems. I don’t know how to address. And so then that spilled over into, we would go meet specialist and, you know, we’re in Los Angeles.
So we were fortunate enough to be in a place where you have leading neurologists and geneticists and all the, all the people that you want to try and help your child. And, and. You know, there were no doubt, some wonderful people in there, but there were a lot of people who had a hammer and my son was the nail and they would come in and say, Oh, Noah has X diagnosis.
And, but not do any counseling, not do any coaching or give us any context. And I would open up my phone and search for whatever that thing was. And you would just go through all this. Yeah, another round of grief. Oh, he’s going to have a short life or, Oh, he’s going to have these additional struggles that he’s not having now.
And so just kind of being, you know, kind of drowning in our, in our grief and, you know, being thrown these different, um, potential lifelines or not lifelines and not having a partner. To help us navigate all of that was just a, it was brutal. And on the plus side, I have an amazing. Partner wife and family.
And my brother, my, my sister, my parents, and Leah’s parents helped us through that. So it wasn’t like we were alone, but you know, for Noah’s specific challenges, we were completely alone. We didn’t have, we didn’t have anybody to really lean on.
David Hirsch: Well, thanks for sharing. So was it about the four year Mark that he was diagnosed with this Fox G one, which I understand to be a rare genetic disorder.
And what is that
Jason Lehmbeck: about? Yeah, it’s this, it’s an really amazing example of where science has come and research on the medical side. And that when Noah was born, how people were able to do the sequencing of the genetics was pretty crude and rudimentary. And kids like Noah would get diagnosed with cerebral palsy and that would be it.
And he would have that diagnosis for the rest of his life as. Noah got older and the technology got better. They started to identify these rare genetic conditions that were the fundamental cause of the different disabilities that a child or a person might have. And so we were on this journey and we went to.
Duke actually, for another reason, uh, we wanted to try a treatment and this was the only place in the world that they were doing this treatment. And while we were there, we met our neurologist who has focused a lot on rare genetics. And he said, looking at Noah, I think he might have this Fox G one. I just read a paper on it.
You know, there are 20 people in the world that have been diagnosed with this thing. And a, I think it might be something that Noah has. So he did the. Diagnostic tests from there and it turned out he was the, I don’t remember the exact number, but in the twenties, the 25th person diagnosed with this disorder.
And so it’s now to the point where 350 people have been diagnosed with it. And so. We’re starting to get better information about the symptoms and the challenges and where progress can be made. And, but it basically presents itself as cerebral palsy. So Noah’s nonverbal, uh, he’s in a wheelchair, so he’s non ambulatory.
Um, he has intellectual impairment, but we don’t know how much because of the communication challenges. So we’re working to help him communicate by any means necessary. Those are the symptoms, but he is an amazing. Kiddo. Like he just, he has a team of five, six people who are just, just, we’re so thankful to have helping them on OT and speech and, uh, physical therapy.
And he’s the hardest working man in showbiz. I mean, he’s just gets in there and does, does the work and. The Hill flashes, smile. Everybody just leans in more. Cause they know that he’s, you know, he’s doing all that he can and they’re they want to help them. And so it’s just, uh, so that’s the beautiful side of it.
He loves music. He tends to go towards the, the teeny bopper, uh, sounds, which is not, not always great, but he just lights up. He likes to hammer away on the piano and in his Walker. And so
David Hirsch: yes, situation, uh, and I dare to. Compare your situation to anybody. Else’s reminds me a little bit of the story. Uh, Dick, I was told over and over.
I think, you know, this story they’ve been doing these, um, 1200 races, 34 Boston marathons.
Jason Lehmbeck: It’s amazing.
David Hirsch: The son, Rick is now 57. Dick. The data is 79. So, you know, back in the early sixties, you know, things are really simple or crude if you will. So he was diagnosed with cerebral palsy and he was a spastic.
What? He is a spastic quadriplegic as well. Right. And for a decade, which is about the age, knows that now. You know, the thought was that he’s never gonna learn, right. He’s never gonna be able to do anything. He’s just going to be a vegetable. And they were trying to get them in the public school system, which wasn’t common back then.
It was sort of evolving, right? The principles, you know, your son’s not gonna be able to learn. He doesn’t understand what’s going on. And Dick tells us amazing story about. Asking the principal to tell a joke and see what happens. So the principal tells a joke and Rick cracks up, right. So it was like, Oh my gosh, maybe he does understand what’s going right.
Jason Lehmbeck: And it’s beautiful.
David Hirsch: The brothers, he had two younger brothers. It’s very similar to your situation. Right.
Jason Lehmbeck: Right, right.
David Hirsch: And the younger brothers, you know, taught him how to communicate. Hmm, by using letters of the alphabet, he didn’t have a way to communicate. Right.
Jason Lehmbeck: Right.
David Hirsch: He couldn’t speak, he couldn’t use his hands for that matter.
So they figured out how to, you know, get them to use the alphabet and would piece together words. And it was, you know, again, this is 40 years ago. Right, right. They had no idea what they were really up against. I wonder, you know, if he was diagnosed. Not that it’s makes a difference. Now, if he would have had something that would be more specific and, you know, if you’re abrupt palsy, which is a big sort of a catch phrase for a lot of different things.
Jason Lehmbeck: well, yeah, it’s interesting that what we found is when we got the diagnosis, it didn’t change a lot in terms of what we were doing for him, because, you know, in the end you need people like he had with his brothers. And I’m sure with, you know, different therapists to really meet you where you’re at. As an individual and really help you based on your strengths and your particular needs.
And so even though the diagnosis was nice and we got to connect into this wonderful community, it’s still the day in, day out, how do we help know reaches full potential is a very people, the people thing and highly personal.
David Hirsch: Yeah. Well, I guess it’s good to know what it is. Yeah. But like you said, yeah.
That’s not going to be like doing a one 80, Oh, we’re doing all the wrong things. You’re doing all the things or many of the things that you needed to be doing anyway with the physical therapy, occupational therapy, muscle tone, and just making sure that he’s, you know, doing all the things that anybody
Jason Lehmbeck: could do.
Yeah, and I, I mean, on the positive side of this, so just the, the sooner you can figure it out, the better, you know, you can equip the person to communicate or engage in. There’s some really cool stuff. I just met a researcher. Who’s doing, um, well, I’ve known her for a year, but it was just talking to her about the.
The research she’s doing, where she puts on EEG cap and she can for nonverbal kids, she can assess what kind of verbal language aptitude the child has. And that just opens up all these possibilities. Some of these kids are, yeah, they’re there they’re presumed to be. I have no intellectual capacity because they can’t speak.
And the, and so she’s finding ways to say, no, there’s a person in there. You just don’t know how to engage them. And so start with that as the foundation and your assumption, and then give them the tools to, to express themselves.
David Hirsch: Yeah. There’s another guy in LA who is part of the network. Uh, Jason rabbi Bradley arson, who has a 23 year old son.
Who was nonverbal and actually as, so there’s a, a little bit of a catch there because they knew exactly where their son should have been
Jason Lehmbeck: right.
David Hirsch: Compared to their daughter from a developmental standpoint.
Jason Lehmbeck: Right.
David Hirsch: So they use something called facilitated communication, which is a bit controversial, but it has to do with.
Using a keyboard to communicate and, um, uh, offering resistance. So instead of pushing on the top of somebody’s hand or their fingers to like push down the key that you’re looking for, right. Um, you actually offer the resistance and make them push down against that. And then you move from that to just touching their hand, touching their forearm, touching their upper arm, and then eventually just touching their shoulder.
And this was like a 10 year process.
Jason Lehmbeck: Right.
David Hirsch: And. Is brilliant. Right. Right. You know, he was basically like you were saying, you know, unable to communicate, but they somehow sort of found the key if you will, to the lock and he’s written for the Huffington post for God’s sex.
Jason Lehmbeck: Oh, that’s incredible. Yeah. It’s just one of those amazing stories.
David Hirsch: you guys, you guys need to connect.
Jason Lehmbeck: Yeah. I would love to,
David Hirsch: I know that that’s not your situation. That’s autism, right. That was sort of a different situation altogether, but yeah. Um, my sense is that these situations are overlapping. Yeah. I am not a medical person far from it, but, uh, you know, from a developmental standpoint, um, even though the facts and circumstances are different, as far as how you got to where you are, like you were saying earlier, the physical therapy, the occupational therapy of these solutions.
Um, are very similar from specialty to specialty in some situations.
Jason Lehmbeck: Oh yeah, yeah, yeah. You fundamentally, you have to get the right team around your child or the, around the person. You have to get the resources. And that’s a big challenge, um, on a number of fronts. And then, you know, it’s just th th that crew needs to supporting the child needs to have the time and space to really help them reach their full potential.
And, and, um, That’s that’s the same for any diagnosis.
David Hirsch: Yup. Good stuff. So I’m wondering if there’s any meaningful advice that you’ve gotten early on or that you’ve received more recently. That’s really been instrumental in his development.
Jason Lehmbeck: The biggest advice I would give and I wish I had read it earlier is a book called not what I expected by dr.
Rita. I can Stein and she. Writes in a really a combination of a beautiful way. And, um, just a real rational way about the grief cycle as a parent, with a child with disabilities naming where you you’re at in that cycle, understanding it, sitting with it. You can’t short circuit going through that. You have to really just try and connect with it and then reach out.
She had this great advice around, have a nine one one. Call list when you’re going through these darker moments. And basically you just have a list of people where you ask their permission to call them when you’re going through these dark moments and they’ll just listen, you know, it was beautiful. And when she was describing this, that a lot of parents of children with disabilities will get friends and family.
And so I want to help anyway, I can help as a parent. There’s this kind of, kind of different reactions, like, well, you don’t know what I’m going through. You can, you know, you don’t know the challenges, you can’t replace all the knowledge and help. And so there’s a bit of that. Um, and so that kind of anger and, you know, a little bit of a denial and, and the other thing is you don’t want to be a burden.
You don’t want to put a burden on somebody else. Um, and what she said is that you would, you would just be surprised if you, if you offer that up to the people who say, I want to help, how much joy and joy is, may not be the right word, but how much they get out of that. And just having the awareness of.
You know, naming it, you’re in this deep dark moment having this tool to have your nine one one list that can help you, but then in many ways will help the other person because they feel like they can finally connect in a way to support you. It’s just, that was eye opening for me. And, and, um, you know, just a real helpful that’s one example out of many things that she lays out in this book that are just it’s, uh, I recommend it to anybody going through this journey.
David Hirsch: Not what I expected Rita Aikins time.
Jason Lehmbeck: Yep. Excellent.
David Hirsch: Thank you for sharing. Reminds me of a conversation. One of the interviews I did and back with the only woman that I’ve interviewed, I’m the dad to dad podcast. Um, Becky Davidson, her husband, Jeff sadly passed away a couple of years ago. So she’s a solo parent, not just a single parent raising a 23 year old son with severe autism and some other challenges.
And. What she realized after Jeff’s passing is that vulnerability, which is sort of what I heard you say, right. As to acknowledge that you are vulnerable and ask for help, you know, and maybe like you were suggesting have the list, right. That call list. If people that you can go to, she described it as that vulnerability is her superpower.
Right. And she’s taken what would be a weakness, you know, on one level and turn it into a strength. Right. There’s things I know and things I’m comfortable with. And there’s a lot of things I’m not, and I just need to embrace that. I just need to know where I’m at and not be burdened with that.
Jason Lehmbeck: I love that.
David Hirsch: Yeah, you’re onto something I I’m going to. I make sure I check out that book, uh, not what I expected. So, um, what were some of the more important decisions that you and Leah made as parents?
Jason Lehmbeck: Yeah, I w I would say the biggest one for us personally was that we actually, and this is personal.
It’s not advice. It was, we both leaned into our careers and our, what we wanted to do in life on the career side. And that. At times added stress because, you know, we both are doing work that can require long hours and can have high stress, but it was life sustaining for both of us. And as I mentioned earlier, she does what she loves every day.
And to have that as her identity and for me, similarly to have it as part of my identity was just, it gave us energy. It gave us joy so that we could kind of bring that back into. All the times that we had to fight the good fight for Noah. Um, so that was, I would say one important decision that both of us made, um, That wasn’t easy.
Um, but, um, was the right thing for, for us and ultimately for our boys.
David Hirsch: And if I could paraphrase what you’ve said, having careers, both of you have in careers as opposed to like one parent. Right. Pursuing their career on the other one being sort of the primary caregiver, if you would, more of a traditional relationship was a way that you both were able to have some balance in your life.
That’s right. Important balance between your family responsibilities and you know, something that. Not only maybe provided an economic benefit, but was intellectually stimulating and challenging as well.
Jason Lehmbeck: Yeah. And I, and you know, again, and that’s a personal thing, but for the two of us that was so critical.
David Hirsch: Well, thanks for sharing. I’m sort of wondering what impact Noah’s situation has had on his younger brothers, Elliot and Isaac, as well as the rest of your family or extended family.
Jason Lehmbeck: You know, my, my younger boys are six and three. And so for the three year old, he doesn’t know any different. Noah’s his older brother and Noah’s Noah.
And so he’s, he’s still at that stage where differences aren’t kind of in your face. You know, individually and at a societal level, my six year old is a, just a deeply empathetic. Beautiful boy. And I’m sure the, you know, having an older brother like Noah’s has had a big impact on him. We’re very sensitive to that fact.
It’s, it’s a gift in many ways, but we also want to make sure that he has his own kind of identity and his own time with mom and dad and others. And we, you know, that could tip into. Anxiety and other things that were, we want to be conscious of, but for both of them, I mean, it’s amazing. Like I mentioned, three year old doesn’t really understand yet, but he wants to feed Noah.
He wants to help. Like, and then you have a three year olds is a terrible threes or whatever they call them nowadays, like trying to help his older brothers, just so it’s, it’s very enriching and beautiful thing. And so, you know, we hope that, um, They learn and grow from it. That we’re all different in our own ways.
And Noah’s different in his own way and embrace that diversity as a strength wherever possible. And we’re starting to see that show up in both.
David Hirsch: Yeah. Well, the boys are relatively young, six and three. So it’s a story that’s just evolving if you will. Yeah. So I’m hoping that, uh, No, you can find that one on one time to do things with each of the boys so that they do develop their own identities and relationship with you.
And it’s not like Noah situation as they vortex, if you will. Right, right. Sucking all the resources and time. We all have a limited bandwidth.
Jason Lehmbeck: Yeah, that’s right.
David Hirsch: And you just want to try to. Figure out what the right balance is for your own situation. It’s not like a right or wrong. It’s just work in progress.
Jason Lehmbeck: Yeah. Yeah.
David Hirsch: That’s right. So I’m wondering from a supporting organization standpoint, um, what has your family relied on? I know that you mentioned previously the Fox foundation, what type of resources that have been for you?
Jason Lehmbeck: That’s been wonderful. I mean, it is a great community online. We, because we’re one of a 350.
Yeah, this is, this is the place to go to ask questions is know, is going through different stages in life. And you know, what, what kind of medications, what kind of therapies has been a fountain of information and also just community to have your own, your own tribe. And so that aspect has been wonderful.
David Hirsch: Any other organizations that, uh, Your family has relied on for Noah’s benefit.
Jason Lehmbeck: He had one, one that has recently come into our lives and in a wonderful way is, um, United cerebral palsy. Everybody knows of them and just the great work that they do, but there they are doing some really cool things here in Los Angeles on the art side and the advocacy side and, and, uh, the art side is, you know, it’s, it’s.
There’s this program run by a woman named Stephanie, um, here in Los Angeles for adults with cerebral palsy, where they have a three D printer. They make an adaptation for the adult artist so that they can engage with the canvas or the camera and whatever means necessary. And. She and her team have created this amazing art community.
You can’t help, but go into this place and think, wow, this is, I want to be here everyday, all day around this energy. And so we’ve gone to a couple of their art openings and our sons have gone and they artists are there and their artwork is just incredible. But then they have crafts for the kids to play with.
And so it’s this instant. Community, obviously not instant and all the amazing work they’ve put into it over the years, but you’re a part of something. That’s bigger than a diagnosis or a set of symptoms or a disability. And so you’re surrounded by this beauty, this creativity, this love. And so that’s been such an amazing find and we just love having that.
And the other quick thing they’ve done among many things is they have a wonderful advocacy group run by a woman named Terry here in Los Angeles. And they’ve done some. Just astounding work and just shocking that it’s taken this long to help make voting more accessible. They changed the way you can vote in LA County, where now you can vote through alternative communication devices.
One of the gentlemen, he can move his foot and that’s the thing that he can control to communicate, to make art. And so he voted with his foot and it was covered in the LA times. And, and so just that kind of, you know, advocacy for. People like Noah, that they’re seeing that they’re embraced, that they’re engaged in not just functional ways, but artistic ways.
Um, it’s just, uh, it’s just a wonderful resource to have here in Los Angeles and then globally. That’s
David Hirsch: fabulous. So it was Noah actually been in some of the art classes, then
Jason Lehmbeck: he’s gone to the, they have like. Yeah, they let, they let him, uh, go get it. They add it with the art date right now. It’s only for adults, but I’ve been talking to them about how do we bring this to the schools?
And so we’re actually talking to them about getting it to Noah’s school because all those kiddos would just love it. I mean, they would have so much fun.
David Hirsch: That’s fabulous. Well, we’ll have to do a followup interview, maybe years down the road and see what type of progress we’re making along those lines as well.
Jason Lehmbeck: That’d be great.
David Hirsch: Any other organizations that come to mind or individuals for that matter that have been instrumental in his development?
Jason Lehmbeck: Yeah, the, the people side we’ve just been so fortunate. I mean, we, when we first began this journey, we had this amazing caregiver, uh, Elliot Hernandez, who just, um, While we were struggling and in some ways drowning, she just leaned in and loved Noah and cared for Noah and, and cared for us.
And, uh, she was just a blessing. And then there are two therapists. I mean, so many that I could mention, but two in particular that just really changed the trajectory for Noah. And for us, one was Nancy Dilcher, who was his physical therapist. And just again, engaged Noah, met Noah where he was and, and helped him.
And so many different ways. And then this speech therapist named Sarah who has worked with Noah for six or seven years now, LA USD, which is a, it’s a miracle that I have a therapist with you for more than a year. And she’s been with him for that long. And she has been bit by bit helping him. Communicate.
And she discovered recently that, um, I mean, we all knew Noah talks with his eyes. Like you look at him, he’ll tell you, he’ll tell you many things with his eyes. And she said, we’re going to get him on this path. So he can use this device called an eye gaze device, which basically tracks your eyes and can become the cursor on your computer screen.
Your eyes can, you know, move the cursor around and engaged with the computer. And she got him that, um, A couple of months ago and just it’s a, it was a hero’s journey and she was just a hero for Noah and, and really getting this in place for him over the last seven years.
David Hirsch: Yeah. I’ve heard people like Nancy referred to as heroes as well as angels, right?
Jason Lehmbeck: Yeah. Yeah.
David Hirsch: God’s placed them in your life and uh, you know, without them, you sort of wonder where would you be anyway?
Jason Lehmbeck: Yeah, that’s right.
David Hirsch: That’s beautiful. So I’m wondering, um, What were some of the things that you and Leah have done to support your family?
Jason Lehmbeck: You know, a big, a big, big part of what we focused on and you hit on this earlier is how do we engage and support each, each.
Boy on their level and really help them become all that they can be and create getting the time for that one on one time for us, with each of them has been a big focus for us and something that we really lean into to support the family as a whole, but then each, each individual. You know, the other thing is there’s a lot of talk about self care in this world for very important and obvious reason, which is given all the stress and the extra time and effort required to navigate this world for a child with disabilities parents burn out.
The divorce rates are two times the divorce rates for typical families. 40% of families with a child with disabilities have apparently the workforce. So it’s just a highly emotional and stressful situation. And so self care, finding the time, finding the space. It’s a necessity, but it’s also a luxury.
We’ve been fortunate to have each other and to allow for each other to do that and to have the resources, which I’m very mindful of. And, but really just finding the space to, to heal, to grieve, to. Have fun, um, has been, I think really important for us as individuals, but then for our family.
David Hirsch: Yeah. Well, I think it’s a challenge regardless of what your family structure is special needs or not, you know, finding that equilibrium.
Because life can be very
Jason Lehmbeck: stressful
David Hirsch: and we all have challenges. Sometimes having some additional resources takes a little pressure off the situation because you can afford to bring others into your family. That’s right. Therapists and counselors and things of that nature. And, uh, I think. Part of it is just the knowledge about the access to resources, right?
It’s not a resource issue itself. It’s just knowing that there are certain resources out there and then trying to connect the dots. So this might be a good way to segue into thinking about special needs, but beyond. The Lundbeck family and the work that you’re primarily focused on in the name of special acts.
So what is special acts?
Jason Lehmbeck: Yeah. So special X is, um, a platform that we’re building. To help families with children with disabilities, navigate health care, education, government benefits, insurance, and really trying to help all families as you hit on. There are reasons courses out there, but to get them requires.
A hero’s journey for parents, you know, an ability to navigate very bureaucratic systems, a willingness to an a, and a confidence to not take no for an answer and resources, frankly, in many cases to hire lawyers or hire experts. And so, you know, after we sold our last company, my partner, and I said, we need to do something more meaningful than helping people sell stuff online.
It was just staring us in the face. The struggles we faced. It’s just given all the support we have from family and community and growing up, believing that the systems work for me rather than against me, that, that privilege. Um, I looked at this and said, well, I, you know, I want to make it better for kids like Noah and, and families like mine.
But. I mean, if it’s tough for us, it’s, it’s gotta be even tougher for, we use that are single parents are English is not their first language or well systems don’t necessarily line up for them. Uh, easily. And so long story short, we said, well, let’s go, let’s use our technology skills. Let’s use our resources to see if we can take technology.
And it’s not an, you know, AI or artificial intelligence is going to solve this. This is a people thing. It’s always going to be a people thing. So how can we take technology and enable and empower people who are doing amazing work in this world to do even more for these kids? Um, and so we. We, we set off to build that last start, building that last year.
And we’re in this, um, small, uh, beta here in Los Angeles testing and with a number of families and we’re in really early stages, but getting great feedback and starting to have an impact for those families in a way that we think we can over time, start to build up and create a movement to help families.
All over the world eventually.
David Hirsch: Oh, without getting too far ahead of ourselves. Uh, my basic understanding is that there’s sort of three parts to this. Case navigator personal information hub and the networking. So if you could just spend a moment sort of explaining what it is that you’re doing or how you’re building the platform out.
Jason Lehmbeck: Yeah. So the care hub is kind of the software piece of this and that is that many parents. Children with disabilities, carry around three ring binders. It’s 2019 and they have these heavy three ring binders of information that they take to the therapist, to the doctor, to the teacher. And, uh, you know, it’s that that’s got to stop.
So the first thing is we built this place where parents can pull together all the information about their child and share it with the team and make sure the team is on the same page, uh, as they work with the child, but do it in a way where it’s. Personal to the child, what are their strengths? What are their loves?
What are their needs, not just clinical documents. And so that’s the first piece. The second piece is we’re hiring people. Who’ve built up expertise in navigating these systems, whether it’s insurance or medical or school, and, um, Connecting those people with that expertise to our families, to help them get reimbursement from their insurance company for that therapy, help them get the right resources in the school.
And the coolest thing about this whole company is that those people back to the point of this is always going to be about people tend to be parents who’ve quit their day jobs. To become experts for their own child. They, for different reasons can’t, or won’t hold a full time job, but they have this expertise and yeah, I want to share it.
And so we give them the ability to work from home to, um, work on their own time, have the flexibility to be a caregiver. If that’s what they want to do with, with the majority of their time, the power of that is just every day, just meeting these people and seeing all the great work they’re doing for their family.
And. Getting them connected to the other families of spend, I’m just super inspiring.
David Hirsch: And then the third aspect is networking.
Jason Lehmbeck: Yeah. And so that just leads right into the networking side. So, you know, the idea that if you have a child with autism or dyslexia or cerebral palsy or down syndrome, that every parent starts from scratch and how to.
To walk down this path of supporting their child is just shocking to me that that’s still the state of the art. And these are wonderful Facebook groups and other groups where you can meet and connect, but at a personalized level for that child, what should I be doing? Where should I be doing it? What are children like?
My child. Getting at the school getting in terms of therapy. And so the idea on the networking side is that as we build this platform and we bring on more families, they can learn from each other. They can share with each other in a more highly secure and privacy protected, uh, environment. Really learn how to do best by their child, from the strength of all, all families.
And so there’s that shared knowledge that comes from the networking. And the other thing we plan to do is shared advocacy. So really March on those insurance companies, if they’re, they’re not handling children with disabilities well, or the school districts and things like that. So that’s part that also be part of the networking is to try and make as big of an impact for all families as possible.
David Hirsch: That’s fabulous. So I’m wondering where would a, the access to. Legal services, right? Those that are super knowledgeable about the ins and outs of the legal systems. And this is not like a national thing. This is like a local, you need to know your local rights, right?
Where does that fit into what you’re doing?
Jason Lehmbeck: Yeah, that’s a great question. We have. So we have education advocates who understand the law and what the children’s rights are in the school. They’re not lawyers. And so when it gets into, you know, things that aren’t being done correctly on that side, we can refer out to lawyers locally that can help.
And we’re spending a lot of time making sure that we find. Resources that are not just for the well off. So there’s an amazing organization here in Los Angeles called learning rights.org that helps foster children, uh, through that same legal process helps, uh, homeless children, lower, lower income families, you know, fight when they need to fight for the rights of their child in the school environment.
So that, you know, the big part of that networking piece is that how do we find and support these amazing organizations and people that are. Kicking butt for kids like ours and, and, um, help them do that for more.
David Hirsch: That’s excellent. So does the special needs Alliance show up on your radar screen?
Jason Lehmbeck: Yes, it is.
David Hirsch: Yeah, that that’s an amazing organization. Uh, my way of thinking about it, it’s like a, a bar association group of lawyers. There’s only like 150 in the country. From what I understand, and they’ve all dedicated 50% or more of their practice to serve in the special needs community. So not to say that you couldn’t get good advice from people outside the special needs Alliance, but these have been vetted attorneys that have been vetted.
And, um, there was just sprinkled around mostly large major metropolitan areas, but attorneys that have had a lot of experience in estate planning, um, and then specifically, uh, For families that are touched by special needs and disability. And, uh, the laws are different, right? And you know, these are experts in their area.
And in many cases they’re not doing it to make money. I mean, they are lawyers, they do this for a living, but, uh, they charge a flat fee. Right. Which is to make it easier for families to engage as opposed to, you know, be thinking, Oh, the clock’s running, right. I don’t want to call my attorney and run up these, you know, significant legal bills.
So, um, I’m, I’m thrilled to hear what it is that you’re doing with special X, but, uh, put some realistic expectations because you were quick to emphasize that it’s a startup, um, feta. Phase. Um, what, what timeframe do you think you’re looking at as far as being able to bring something to the market? If you will.
Jason Lehmbeck: So our, yeah, the timeframe for us is we’re going to launch, um, more formally the offering here in Los Angeles over the next year, and really make sure we get it right in one city. Everything from getting the right kinds of, we call them navigators, people onto the platform, supporting families, finding great.
Resources like learning rights and the special needs Alliance and get the playbook set. And then we, after that year of, of work, we’ll, we’ll go nationally. Um, and, and branch out from there.
David Hirsch: Well, I’m excited to learn more about that. So thanks for sharing. So I’m thinking about the banner of advice and I’m wondering, um, what are the more important takeaways that come to mind raising a child?
With different stuff.
Jason Lehmbeck: I’m going to steal the advice you gave earlier. Cause I thought you had articulated it well from your, your one, one non dad guest. Becky. Okay. So yeah, I’ll steal from Becky that, uh, I think that vulnerability point is turning that into a superpower is just amazing. And you know, I, I have, you know, as I hit on earlier, like these tools, like the nine one, one thing that I got from dr.
Rita, I can Stein, but really just. Leaning into the support that exists out there and being open to, to accepting it wherever it can come from. And I know people are in different situations. So, you know, I was fortunate to have just a wonderful support network on my family and my wife’s family, but it’s, it’s there it’s somewhere.
It’s a podcast. It’s a, it’s a blog. It’s, I’m your neighbor like just lean into it and get, get that support.
David Hirsch: I’m wondering specifically, if there’s any advice that you’d have for dads
Jason Lehmbeck: even more. So, I mean, we’re just a, we’re wired and, and culturally pointed towards not being vulnerable and not reaching out and engaging, and we’re going through the same grief, um, and the same challenges.
And so I think that, um, You find that support, especially because it’s not wired in, you know, w we’re not natural Facebook shares of, of grief, or we’re not natural offline group performers outside of things like baseball or basketball, or, uh, whatever, whatever the typical ways male tribes come together.
So find, find that, find that support wherever you can.
David Hirsch: Well, part of the challenge is remember, We’re not even wired to pull over and ask for directions when we’re lost in the car.
Jason Lehmbeck: That’s right.
David Hirsch: I jokingly say, thank God for GPS. That’s probably saved a lot of relationships over the year. That is true. I mean, that’s just who we are as men.
Um, yeah, on
Jason Lehmbeck: average, you are, you are a leading light in this and, and the work that you do on a number of fronts. And so I really appreciate what you’re doing to, to get us to look at the. The navigation system or pull over for directions.
David Hirsch: Yeah. Well, I’m hoping that a part of what you’re doing yeah. In the name of special exes, creating that, that tool to help parents, not just dads, but parents navigate this, you know, challenging world that we live in, we all live in and especially challenging if you have a child or children with special needs.
So I’m sort of curious to know why is it that you’ve agreed to be a mentor father? As part of this Special Fathers Network?
Jason Lehmbeck: I genuinely believe that we all need help through this journey. And, um, if I can in any way, help somebody else see that and support them, I want to contribute in any way that I can and then vice versa.
Um, I know I’m going to need help. And so in, in those connections, and I’m a big believer in when you’re mentoring somebody, you’re also being mentored and if you’re open to it and, and, um, it’s such an amazing. Thing that you’re building here and I’m excited to participate in helping engage in any way that I, okay.
David Hirsch: Well, thank you. We’re thrilled to have you as part of the network and it’s not lost on me that you volunteered to be a mentor father. Your oldest is 11, right? You’ve got some experience. You’ve got some feathers on your wings, but you know, there’s so many other milestones that, you know, your family is going to be crossing in the years, if not decades to come.
So, you know, you’ll probably fit in the middle. Right. You’ll be mentoring some with. You know, we’re close to the beginning of their journey and you’ll benefit, hopefully from developing some relationships, you know, with some of the guys who are even more seasoned than yourself.
Jason Lehmbeck: So yeah, I would love that.
David Hirsch: let’s give a special shout out to our mutual friend, Jennifer sidemen at the courageous parents network for bringing us together. They do amazing.
Jason Lehmbeck: Oh my, we had them on our podcast, uh, almost a year ago now and just a. The, yeah, the work that they’re doing and this just back to this fundamental point on vulnerability and support the support that they provide families, or it’s just, it’s, it’s a blessing.
David Hirsch: Yeah. Well, let’s use this as an opportunity for you to, uh, Uh, give a little bit of a commercial for the podcast that you’re doing.
Jason Lehmbeck: Yeah. Yeah. Great. I appreciate the, uh, the opportunity the a podcast is with a good friend of mine, Elizabeth Aquino. Um, she has a, uh, an older adult daughter who has multiple medical complexities and, um, She, and I are doing a podcast called who lives like this, where we interview parents of children with disabilities.
Um, and it’s just about the caregiver journey, the grit we call it, the grit and the grace, um, and really digging into kind of both sides of, of, of this life and just sharing stories with other amazing people. And we’ve had some wonderful guests on that, uh, are doing just. Unbelievable things in the world, the parents who run little lobbyists, which, uh, I don’t know if you’ve heard of that organization, but I should have given them a shout out early..
David Hirsch: Little lobbyists.
Is that the name of it?
Jason Lehmbeck: Yeah, it’s, it’s amazing. They are fighting the good fight for families like ours at the national level. And now the state level to make sure that, um, things like preexisting conditions doesn’t go away. On the healthcare law side of things and just doing amazing work in advocating at a political level for our children.
David Hirsch: Well, thanks for sharing. Uh, and the title of your podcast again is who lives like this with a question Mark.
Jason Lehmbeck: That’s right.
David Hirsch: That’s right. Okay. Is there anything else you’d like to share before we wrap up?
Jason Lehmbeck: No, I appreciate the time and just so grateful for this podcast and the resources you’re building out and supporting families.
David Hirsch: Thanks. Um, if somebody wants to get information on Fox Jeewan or contact you about special X, how would they go about doing that?
Jason Lehmbeck: They can reach me by email. It’s just Jason at team’s special x.com and happy to answer any questions on any of those friends.
David Hirsch: Excellent. Jason, thank you for taking the time and many insights.
As reminder, Jason is just one of the dads. Who’s agreed to be a mentor father as part of the special father’s 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. There are a host of ways you can support the Special Fathers Network. In addition to subscribing to the special father’s network data dad podcast, you can post a review on iTunes. Share the podcast with friends. Please also consider making a charitable donation to the 21st Century Dads Foundation.
Jason. Thanks again.
Jason Lehmbeck: Thank you.
Tom Couch: And thank you for listening to the dad to dad podcast presented by the Special Fathers Network. 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 fathers to support fathers, go to 21stcenturydads.org. That’s 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: If you enjoyed this podcast, please be sure to like us on Facebook and subscribe on iTunes or wherever you listen.
The dad to dad podcast is produced by Couch Audio for the Special Fathers Network. Thanks for listening.