091 – Rob Wrubel, CFP, Special Needs Planner, Author and Father of a Daughter with Down Syndrome

Transcript:

Dad to Dad 91 Rob Wrubel, CFP, Special Needs Planner, Author and Father of a Daughter with Down Syndrome

Rob Wrubel: Some of the funniest moments in our family life, or when she’s in the hospital with pneumonia, she woke up in the pickier, the pediatric intensive care unit and that, because she hadn’t been thriving and something finally loosened and they sent her, Hey, Sarah, do you want something to drink? And she wanted a milkshake. And so she took her first step and a milkshake. She looked up at everybody and says, tastes like summer. She’d been sick in the hospital for 10 days. And she had like about a dozen things. She said during that hospital visit, everybody is just lying to everybody today.

That’s Rob Wrubel, a father of three, including Sarah who has down syndrome. Rob’s a financial planner who specializes in helping special needs families invest in their future. He’s an author and an advocate for children with special needs. We’ll hear all about them on this Special Fathers Network, dad to dad podcast. 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. 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 daf.

Tom Couch: And now it’s listening to this conversation between Rob Wrubel and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Rob Wrubel of Colorado Springs, Colorado, who is a father of three, a certified financial planner, author, and advocate for families raising children with special needs.

Rob, thank you for taking the time to do a podcast interview for this Special Fathers Network podcast.

Rob Wrubel: Yeah. Thank you for having me on we spoke last week and I’ve been looking forward to it.

David Hirsch: You and your ex wife are the proud parents of three children, son, Benji, 18 and daughters, Annie 13 and Sara 17, who has down syndrome.

Let’s start with some background. Where did you grow up? Tell me something about your family.

Rob Wrubel: Sure. I grew up in Bergen County, New Jersey, which is just outside of New York city. So if you cross over the George Washington bridge, you’re five minutes from my house. Basically my parents are still together.

They still live in the same town that I grew up in. They moved from the house that I grew up until I was 18 into another one. So basically I’ve known two houses where they’ve lived their entire lives. I always joke a little bit, and this is off topic, but I was living in London. Hadn’t called in a while.

I had called and they said, are you okay if we moved? And I usually make the joke that they moved without telling me, but at least they asked my permission a little bit. And then I have two brothers as well. I’ve got an older brother. Who’s three years older than me. I live in Los Angeles and I have a younger brother that lives in Arizona.

We still get together on a regular basis. We all have good relationships with each other. We just happen to our careers and lives and paths that Kristin did.

David Hirsch: Excellent. Well, it sounds like if I were to paraphrase what you said about your parents and the housing situation, that there’s a lot of stability when you were growing up.

Rob Wrubel: Yeah, absolutely. We grew up in, I grew up in the. Sixties and seventies, but it was a little bit like growing up in the fifties. I think that we grew up in a relatively small town where we could bike walk and go and walk everywhere. And, uh, yeah. And it was very stable. Excellent.

David Hirsch: So out of curiosity, what does your dad do for a living?

Rob Wrubel: My dad owned some newspapers in Northern New Jersey. They were community newspapers, weekly that you get for free. And it was in a town about 20 minutes from us. And he had a chain that went through a bunch of towns in Northern New Jersey.

David Hirsch: Did you deliver those papers when you were really young?

Rob Wrubel:  I did not.

They were not in the town that I were in. I, that we lived in and we couldn’t do it now. It’s a one day a company, 900 newspaper wrap for the local daily paper. And it was something I never wanted to do, but I did work in the papers. And, uh, I worked in the South department when I was old enough to do it.

David Hirsch: Well, the reason I asked about the paper route is that when I was super young, I think I was nine or 10 years old. I was one of those kids that delivered those local free newspapers. And then you’d go around like monthly or quarterly. I forget what it was. And you basically looking for tips. That was my, one of my first jobs, if you will.

And I didn’t make a lot of money, but I remember winning some. Sales competition. And I got sent to the Mickey Owens baseball camp. I was 10 years old in Missouri and it was like, you know, like a dream experience for a young guy who is really into baseball. And, uh, you know, they were only like high school guys that, you know, were the bigger campers.

Um, but they seem like. You know, real life people,

Rob Wrubel: frankly, for a kid at 10, what could be better than going to a baseball camp then, you know, a couple bucks wouldn’t have had the same life memories. That’s great. Exactly. Yeah.

David Hirsch: So, um, how would you describe or characterize your relationship with your dad?

Rob Wrubel: Really great. I think my dad is one of my mentors in life, for sure. And then after I graduated college and I had been planning to go to graduate school actually went for a semester and decided it wasn’t for me. I went back and worked with my dad for seven years. I think it was maybe eight somewhere in that neighborhood.

And so it was great to have the ability to watch him professionally and then also, um, see how really, what a wonderful person he was to everybody around him too. And so I know a lot of people say, gee, business owners and business leaders are not kind people, but think my dad really led from both his heart and his brain.

And he was one of those people that just, when you met him and if you meet him today, you just, you feel better for meeting him. And so it was great for me to have somebody like that in my life.

David Hirsch: Excellent. So was there an important takeaway or takeaways that come to mind when you think about your dad, something he always said or did that, you know, resonates with you?

Rob Wrubel: That’s a great question. I don’t think there’s or any of those, like pearls of wisdom comments necessarily. And I think it’s probably because, you know, I wasn’t listening them my own teenage and young adult. I think it very much had to do with the way that he interacted with people, that everybody was his friend in a, in a really healthy and good way.

So if we were on a. A boat going someplace, or you were sitting in the airport. He had plenty of time for all of us, his family members, but he’d also just be happy to meet the next person that was around. And, and he has this ability to strike up great conversations and sometimes lifelong friendships with people.

And that’s something that I really appreciate about him.

David Hirsch: Excellent. Well, it sounds like he is a positive person and he was making himself available, not just to you as family members, but friends and work colleagues.

Rob Wrubel: Yeah. And even when I was younger and I look at this as I’m raising my own kids and we’d come back to it a little bit, even though he had his own business, that was 20, 25 minutes away from the town we grew up in.

He helped coach little league. I was a baseball player as well. I don’t think he coached soccer because he didn’t know the game at all, but he, you know, he’d make as many games and practices and because he’s very present as well as that, and not just there, but participatory as well.

David Hirsch: Excellent. Any other father figures while you were growing up or maybe as a young adult, as a dad yourself that you emulated?

Rob Wrubel: I really think it came from my, my dad was probably the biggest influence in my life. If it weren’t. That many other people and part of it’s. Cause when I was in those formative years of working, I’ve worked with him. And then after that I led a business here. And then after that I was pretty entrepreneurial and doing the work that we do.

And there wasn’t anybody that really spit out any one person as a, as a path there, it was more from my own reading. And then just going to workshop seminars and talking to people, but no one person.

David Hirsch: let’s switch gears a little bit. Um, from what I remember in a prior conversation, you went to Wesleyan university in Connecticut, and you had a degree in Chinese history and religion. What were you thinking when you graduated? What was your career pre like that?

Rob Wrubel: So I’m a big believer in the liberal arts in wetland, strong liberal arts school.

I live up the block from another one here in Colorado college, you know, on the idea of the end of liberal arts school is you learn to learn, I think, more than anything else. And then after you graduate, you apply that Mark. It’s still totally begs. The question that you asked is what was I thinking at the time?

Uh, initially I thought I’d be a history of government major. I’d go into law or business. I didn’t even think about business that much. Uh, this is a case where I had a great professor, Jim stone, who made some material just come alive. Um, and he ended up being one of my people that I took many classes with.

He didn’t end up being, I also got a master’s degree with Matt, my master’s thesis person. So I thought I’d go and teach until I went to Taiwan right after I graduated from college. And then I thought I’d come back. I applied to graduate schools and I spent a semester in graduate school. So the plan was to become a professor, Chinese history and religion and teach somewhere around that.

After about a semester of graduate school, I realized school wasn’t for me anymore. I just, there were more interesting things for me that I could do outside of school.

David Hirsch: So, uh, from what I recall, your, uh, career started by working with your dad, like you had mentioned earlier, and then, um, you went to a business called cycling times.

If I remember.

Rob Wrubel: Graduate school. And I was spending almost as much time on my bike and my bicycle, not motorcycle as I was, uh, in the library. And I think that was when I realized maybe school was not going to be for me anymore. And then when I got back to New Jersey, my dad, at that point, it sold his newspapers.

He had a small ad agency, um, and I was really into cycling and I was trying to find out what was happening. Locally in the area. And I thought I’d put together maybe a book walk or a group of maps or something to say, here’s what’s happening. It turned out there’s a very, very active cycling scene in the New York area.

There were racist in central parks. I came all over an hour from the city. Yeah. So, and so I actually started the bicycling magazine called cycling times and had that for seven years. I think, walk to work with my dad on the ad agency. And we had some other small publication stuff. We did. Okay. Yeah.

David Hirsch: Well, we could probably have a whole other conversation about cycling because I’ve done a little cycling on behalf of the 21st century dad’s foundation, Santa Monica, to Chicago, Boston, and Chicago around Lake Michigan.

And, uh, you know, it’s. It’s passion cycling as a passion. And you know, it’s not only a good for you from a health standpoint, but, uh, you know, it’s, uh, something that I think will draws people together.

Rob Wrubel: Yeah. So there’s like everything. There’s so many great ways to create community. And, and I know we talked about the, the great work you’ve done to raise funds through cycling events.

And I’ve done a couple where I did Boston in New York for, uh, AIDS groups in New York when I had the magazine. And those rides are, as you prepare for them. And as you get to them, they just, they can be life changing events because people, all of a sudden find out they can do more than they ever thought they could do.

And then you’re obviously doing money raising money for this cause. So it’s just bad for me. It was a great way to do things.

David Hirsch: Yeah. But it’s a win, win situation. So thanks for sharing.

Rob Wrubel: Yeah. So I’m

David Hirsch: sort of curious to know before Sarah was born, did you have any experience with special needs?

Rob Wrubel: I did not. I grew up in, like I said, in the sixties, seventies and eighties in elementary, middle and high school.

And at the time people who had special needs, I didn’t even know if I knew the word down syndrome at that time or autism. Those people really sat in their own classrooms and didn’t mix with everybody else. And then I didn’t have any personal family experience. And so, yeah, sure. I knew some people that had family members that very much on the periphery of my life.

But until Sarah was born no direct experience and probably hadn’t spent 30 minutes in a room with a person with autism or down syndrome or any other significant disability.

David Hirsch: So what was Sarah’s diagnosis and how did that all

Rob Wrubel: transpire? When Sarah was born, we didn’t know she was going to have down syndrome or not.

We hadn’t done any specific testing around that. And so when we got, when she came out and was in the nurse’s hands. The nurse looked at her, I looked at her, the doctor is looking at her and I said to my ex wife at the time who he was he’s actually. So she was out of it anyway. I said, no, it looks a little bit funny.

I didn’t think anything more about it. But then the medical team swooped in and said, Hey, we have a very sick newborn here and we have to do lots of different things. And so she was rushed to the NICU, the Neo natal intensive care unit and lots and lots of people were involved and they basically said, No, give us our space.

Cause we need to figure out what’s happening here. And her purse was very different than my son. He was a very typical baby and wow. I get to hold the baby quickly. And there are, uh, and I’ve heard from many, many people that I’ve talked to since that when the day doctor or nurse came in and said, Hey, you’ve got a family member, a newborn here, who’s got a disability or down syndrome.

That usually actually the medical community in the past has botched that conversation. Ours was very different that they walk on eggshells and tiptoe around it instead of you’re being positive without it. But yeah, later that night after my wife was recovering, our doctor who came in and told us all that was going on and she gave us some great advice that I’ve heard many, many times, which is.

He’s taught you were going down a particular path. You have your son Benji happy, healthy kid at 18 months or so, you know, you’ve done some typical things with Tammy hit all developmental marks or even been early on walking and all that really late on sleeping, really early I’m walking. Um, and she got one.

Now you have a daughter with down syndrome and really you have to think differently about the lights you’re going to have. You have to give yourself some time today. She said grieves for that life, you thought you were going to have. And then make room for the life you’re going to have. And it was great advice that the doctor gave us.

Um, we were very, very focused on her survival at that point, not knowing exactly what’s going on. She had a heart issues. She had something else like cancer. She just wasn’t thriving at that point. And she ended up being fine and healthy and all that kind of stuff. And so our focus immediately just became on her immediate health needs.

But it really did give us some space very quickly to say, all right, we have a new life and let’s move on for that. And for some reason, we both moved quickly to find out more about what it’s like to have a family member downtown.

David Hirsch: So that conversation that you were making reference to, just to clarify, Rob,

Rob Wrubel: when

David Hirsch: did that take place?

Was it like that night, that week or was it farther down the road when the diagnosis.

Rob Wrubel: No that night, I think I’m bad with time of day and it was a hazy time, but I think Sarah was born around one. I have to go double check. And I think that conversation happened by seven or eight that night. And thankfully for the doctor, she did a great job with it.

Yeah. Yeah.

David Hirsch: Well, like you said, it doesn’t always happen that way. Uh, sometimes that not intentionally, but the bedside manner, if you can call it that, you know, isn’t is, um, isn’t as thorough or comprehensive, you know, it’s like I coulda woulda shoulda type of deal. And maybe it did set you on a little bit different path than the level of anxiety or uncertainty wasn’t as.

Hi, as I would have been in a different situation.

Rob Wrubel: Yeah, no. And I’ve talked to somebody out too. It took them several multiple days to give that same communication. And, um, and everybody avoided the mom and the dad at that point and they didn’t know what was going on and they could tell something. So.

David Hirsch: Yeah,

Rob Wrubel: we are in the situation where sometimes we deliver very good news and you know, recently not such good news.

And I think people appreciate honesty. And, uh, I try and do that with my kids too. And that’s one of those situations where I go back, you know what? It’s just better to have the news in front of us and then what can happen next rather than wait around and wonder what’s happening at all. If that makes any sense.

Yeah.

David Hirsch: So what was the first reaction to the diagnosis? Um, you’d said that you didn’t know very much about down syndrome, obviously there was this. Okay. Let’s learn about it. Um, and you, uh, go back though 17 years and put yourself in that situation.

Rob Wrubel: Yeah, that’s a good question again, I think because she was so sick, the part of my brain that said, Oh, she has down syndrome basically said, okay, she has down syndrome, move on.

Let’s find out what’s next. And then, um, in the next couple of days, it was really about getting doctors together to change the course of treatment and figure out what was most important was for it to happen. And just sort of the overwhelm of, okay. We also have an 18 month at home. So how is that all going to happen?

It was a lot, it changed immediately having nothing to do with her having down syndrome. So I just, it was one of those that don’t know anything about it. I didn’t know if my life would be better or worse than any way. And. Didn’t give it that much thought right away, which did happen. And I think this is, again, something that helped quite a bit is my nature.

Especially back then was to say hunkered down. I brought to him right now and, uh, and not necessarily talk about everything that’s happening. My ex wife, one of her great skills is talking to everybody all the time about everything. And so very quickly, her way of processing was calling as many different people as possible by doing that, we met.

Or heard from, or got support from so many people who said, Oh, I have a niece with down syndrome. I have a brother with down syndrome. My granddaughter just has down syndrome. And all of a sudden, really within weeks, a whole new world of people opened up that we didn’t even know existed and never would have thought to ask.

And so she started having lots of conversations. That’s are having some conversations as well with those people about all the great things that, that. That the daughter or son in that case brought to their life and had part of that was down syndrome too. The other piece of it, and this was just totally by chance, the local down syndrome association, the nonprofit that supports our local community had their board meeting in the hospital.

And I don’t remember the first week or second week we went to one of the board meetings and met, you know, 10 or 15 families pretty quickly. Who, and it may have been even a little bit later than that, who, uh, all of them were able to give us their insights into how their family members made their life better.

And so, and then within months we went to a number of events and met even more families. And so I think there was something about the immediacy of it. Not saying anything, I don’t know why we didn’t say good, bad, different. We just jumped in and our life changed instantly. And. And there are many, many, many, many positives that have come out of that.

David Hirsch: Yeah. Well, I think what you’ve said, if I can paraphrase is that there was this community that you didn’t know existed, that you got plugged into super early. So you didn’t isolate yourself. You didn’t, you know, sort of hunker down in the cave, waiting and wondering for what was going to happen. And that helped you.

Navigate into this world of raising a child with down syndrome.

Rob Wrubel: Yeah, exactly.

David Hirsch: That it is what it is. And you know, you can grieve the loss of the life you had anticipated. Um, that’s natural, but. To get stuck there or to dwell on that. Um, isn’t healthy either. So maybe again, with the benefit of hindsight, getting plugged into that extended group of people that were weeks, months, years ahead of you with their own child, son or daughter, you know, was really a blessing.

Rob Wrubel: Yeah. And more as I get through life, the faster that you can jump in and learn. The experience, the faster you can embrace change. And I know a lot of us don’t want to, and I’m one of them.

David Hirsch: Were there some other important decisions you made beyond just plugging yourself into the community that you can look back now with 17 years of experience and say, Oh, this was really important, uh, on Sarah’s behalf or her development.

Rob Wrubel: There were a number of things that we could have delayed. We’re spent more time thinking about when Sarah was born.

One of them has to do with early intervention. And so if you have families that are out there, rev special needs members and their do dads, specially will be intervention. We think paid off huge for her. And in her case, it looked like speech therapy, physical therapy, occupational therapy, many of which are covered for in our state, at least from zero to three.

If they’re not covered a hundred percent by insurance are usually picked up by Medicaid funded services. So a couple of different things. One is we had a social worker pointed us in one direction of make sure you get some of these things in place right away in terms of therapy. And so we had therapy appointments when she was tiny, like weeks out of the hospital, tiny.

And she’s still tiny, but that’s a different issue. I hadn’t so early intervention we think had paid off well for her. Um, my, again, my ex wife to her credit said at some point let’s get little trampolines and we now have a big trampoline in the backyard. Um, because core strength and knee strength is so important.

So she was great at finding ways that we could strengthen Sarah’s physical capabilities. And then, um, early intervention around speech and language, she was very talkative lady. And she’s, like I said, right now, she’s out with my two other kids are playing soccer in the field. And, um, and so I think a lot of that had to do with how much happened part of that’s just natural to her as she was going to do and family.

But I think a big part of it was early intervention and trying to do as much as possible. And so that was a big decision. I think that helped her quite a bit. Then the other piece and, and really, I think for so many families today is that our school, especially in our preschool and elementary school, that of course we want Sarah, she’s just another kid, like everybody up in so many ways, and yet she needs different supports.

So when I look at my children, they went to a very good elementary school. When I look at those classrooms, classroom, have kids with them. All over the place. You’ve got very high achieving kids. You have kids, you need extra help. You need to have people like Sarah who needs speech therapy. There’s so much going on in the classroom today.

And she was mainstreamed for the most part until middle school. And that’s what they call when she’s just in the typical classroom that shouldn’t even have a word at this point. And then her services were delivered in the classroom. We’re side by side. They take her out a little bit here and there. I think that interaction for her.

The typical kids, all the along, when she was young was great for her. Alice, I think it was great for all the other kids in that school.

David Hirsch: Excellent. Not to focus on the negative, but have there been some challenges along the way?

Rob Wrubel: Yeah. The, the initial health challenges were pretty difficult. She had heart surgery at six months and then when she got home and went right back into the hospital, that was probably the low point because it really put us right back into the situation where we didn’t know if she was going to make it again and everything ended up being fine.

She had a significant pneumonia that got her into the hospital for about 10 days or two weeks. Well, I dunno one of the great things, Sarah, and really if I stop and appreciate my kids in different ways, some of the funniest moments in our family’s life or when she’s in the hospital with pneumonia. Oh, my, she woke up in the PICU, the pediatric intensive care unit and that because she hadn’t been thriving and something finally loosened.

And they said, Hey, Sarah, do you want something to drink? And she wanted a milkshake. And so she took her first sip of the milkshake. She looked up at everybody and says, summer you’ve been sick in the hospital for 10 days. And she had like about a dozen things. She said during that hospital, that everybody is just lying to everybody.

And so she has these moments of that, but there have been some health challenges that are there. And of course, I think in the work that I do around writing and speaking and working with families. There are times that are coming up. That will be difficult when she loves being in school when high school and a lot of people caught the clip or the black hole.

There’s just not as many opportunities right now for her as there are for my other children, is that sometimes it’s been more looking ahead is, is the more difficult piece of it. What I’ve been struggling with another book around this. Um, but I think I’m in a sidecar, but one of the chapters I was writing said, When I start to think that way, I also have to shift over and say, when we go to a restaurant or we’re out someplace, which obviously we can’t do right now, but we’ll be doing the next couple of weeks where we go to a new situation with lots of new people.

Sarah is very often the first, it might be children to go and meet new people or talk to people. And so I often think that as much as I’m worried about, will she have access to a social life and. Know, some engagement with the community through employment. Uh, I have a feeling she’s going to get that all figured out, but I know that that’s, so that 18 to 21 one is this period of time.

That’s a lot of strep. And then depending on that, again, the people I talked to and health issues that some people just don’t have the same opportunity she’s going to have then. And so I’m building a light can be a little bit more difficult, but there’s a lot more resources now than there were certainly 30 years ago.

David Hirsch: Absolutely. I’m sort of curious to know what impact Sarah situations had on her siblings, uh, the rest of your family or your marriage for that matter,

Rob Wrubel: start with the marriage. Just cause I think that’s an easier one. Actually. I know usually that’s a more difficult one. Again, I’ve been divorced since 2000.

They’re separated since 2011, the first few years, I would say it really brought us closer together. And when we were talking last week, a little bit. One of the things I heard from nurses in the NICU was that they don’t see a lot of that. Then I was there quite a bit. We would take shifts, you’d be there together and go.

And so there was almost always somebody in the hospital, whether it was me or my ex wife. And one of our friends said, you know, usually Stripe, like this it’s worse on marriages, but it really helped bring us together. And like I said, the nurses that were surprised to see dad there. So I think. Now part of that, the strong dad model that I had is to stand with things as you go along.

And I know that’s a big part of the work you’re doing is trying to say, have you ever dad, whether you’re divorced, you’re not engaged. And then, um, I think just the underlying issues that we had ended up as the kids got to a certain age, if saying, you know what, it’s probably better for us not to be married.

And we both agree on that. So I don’t think it would necessarily, uh, certainly positive and longterm, whatever it was. Correct. My other kids, most of the time, the kids get along really well. And I know that’s not always the case in families. And I do attribute that part of partly to Sarah and the fact that she can do a lot of things, but there’s also some additional needs on her end.

And I think her brother and sister recognized that. And Karen takes a lot longer to do everything. And so I think we’ve all learned some degree of patience, even we’re trying to wait for her to get her shoes on or whatever it happens to be and find other things to do along the way. And for some reason, my kids are all very, very kind.

And I think, um, hopefully that’s partially for me and, and my ex wife. And I think a big part of that is from seeing that Sarah needs some extra help and how much, how far it goes. That little bit of kindness that they give to her and the lots of kindness that she gives to other people and how positive people react to her because she’s so kind.

And so I think that’s really been beneficial for all for the whole family taught me patience. She’s taught me to just enjoy some of those moments that come along. Far easier than I ever did on my own. And, um, and just to look for those surprises that come along, because she’ll just say something that you don’t think she’s going to say and it’s spot on.

And, uh, and it’s just fantastic. So, yeah.

David Hirsch: Excellent. Well, thanks for sharing. So what I heard was patience and kindness, and I was going to say that maybe she was just taking after your dad, as opposed to you.

Rob Wrubel: Uh, probably a little bit,

David Hirsch: but I’m sure you learned

Rob Wrubel: from your dad as well. I did. Um, but you know, as you’re going along, you’re just in your head so often in life. And, uh, and as much as we’re view and I are both engaged with other people all the time, sometimes you just in a rush to get what you want to get done. And, uh, sometimes she’s taught me, Hey, you know what?

There’s other people around who need my help. So yeah.

David Hirsch: Exactly. So I’m curious to know a, you mentioned about the different levels of therapy, speech therapy, occupational therapy, et cetera. Were there any organizations specifically outside the school that, uh, were instrumental in Sarah’s

Rob Wrubel: development? I think great question.

We had the luxury of both private paying on some things, and then using non private organizations that are in our state nonprofits and some States or quasi governmental agencies. And so one of the things that you quickly learned, if you’ve got a family member with special needs, is there a fair amount of resources out there?

There’s not everything they don’t pay for everything and it’s worth some time tapping into those. So we had an organization, our community called, uh, called the resource exchange. And so they’re a local nonprofit that is sort of the access point for a lot of information. And they actually, I think, provided us with.

Some additional therapy on top of what we paid for. And we found a very good private therapist as well to go all before Sarah hit school. Once in our state, at least I think many States, I like this. Once you play the school, then some of those closet, governmental ones rotate out and school districts rotate in, but we kept our private therapists in some areas for a period of time until she just didn’t need it anymore or graduated from therapy.

So one of the things I did discover, and this is important. For families, who’ve got 18 year olds in your listening base or adult is there in every community, reasonably good organizations that can provide access to healthcare. In some cases community-based support like, uh, if somebody can work sometimes there’s you have a job coach, uh, transportation, 24 seven living depending on the circumstances.

Or sometimes if somebody comes into a home. And acts as a certified nursing assistant CNA. And so a lot of those are done by nonprofits in the community. So I think that, yeah, trying to teach people to do is really stand top of who’s deaf in your community. Spend some time going out there, interview these people, find what’s best for your family and make sure that if the next phase happens, you’re ready for it a little bit.

And we’ll talk more about that problem.

David Hirsch: Excellent. Thanks for sharing. Uh, let’s switch gears and go beyond talking about your own personal France to what I would refer to as your professional experience. So your company, um, that you work for cascade, uh, you do a lot financial planning and investment advice, and it’s not just traditional financial planning and investment advice, but you’ve decided.

For some reason. And maybe you can show that with our listeners to dedicate a portion of your practice to serving families with special needs. So what is it that you do and why did you choose to focus on other families like your own?

Rob Wrubel: Yeah. Great question again. This is where the personal and the professional start to weave together a little bit more.

So again, Sarah, pretty interesting. Let’s call it first year in the hospital, heart surgery and ammonia, all kinds of fun stuff that we had the first year. And I was just at the time, new in the career as a financial planner and investment person. And just as I was trying to find out what I’m supposed to do for other families, I started to think, what do I need to do for my family?

And so I went to the local estate planning attorneys that I knew and tax people and just started to ask, and this is what I recommend of everybody. When you’re trying to learn something, there’s lots of people who have far more knowledge than I do. And so I just wanted to go out and ask people what’s happening.

So for me, it was one of those moments of, I’m not sure what I even need to do for myself here. That might be a little bit different. I don’t want to, all of a sudden find out I did everything wrong as I’m building my financial life and financial plan. And so the internet was just 17, 18 years or 17 years ago.

Was good. And just like today, there’s way too much information. And it was just as hard today to find out what was useful and good information, as opposed to somebody just posting something that they think is important. So the internet searches were helpful, but not really directing what I think I should have been doing for my family and certainly not what I should help other people do.

So I spent a lot of time, probably three to six months, really, probably more than like a couple of years, as I think about it working towards what are the basics. And so there’s this concept called the special needs trust at the foundational element. My book, I call it the foundation. Cause it’s how you build your strong house and your strong foundation.

There’s some tax differences that are a little bit different and then there’s some different challenges on paving and investing for the longterm and then funding trusts and why the trust need to be funded over time. And so. There’s ICOM nine different building block areas that are important. Four or five of those are on the financial side, legal and some just basic planning step.

And so it took a while for that to all coalesce into a way that I can really talk coherently to other people about it, but I knew this idea of the special needs trust there. And so the journey really began with me. And then I quickly realized how important it was that, um, People have some of these building blocks in place, because there are potentially tens of thousands or millions of dollars in government benefits at stake that families typically can’t replace.

So

David Hirsch: what percentage of your practice have you dedicated to, or how does it look from a percentage standpoint? I

Rob Wrubel: think it ends up being about 30%, a third somewhere in that ballpark in terms of. Yeah about the numbers of people I work with and then the amount of money that I help manage for people. I think it’s roughly about a third.

I also, and again, I’m with a firm that allows me to do this, and I noticed the same for you where I go and speak around the country and on special needs planning and some of the steps that people should take. And so from a time perspective, it’s probably a little bit more than 30 at this point, just because, you know, if I fly to Detroit for a conference, it takes a little bit more time.

One of the great things about it. And I know you feel, I’m guessing that you feel the same for your clients is very often in the first meeting, you can identify ways that you can help people in terms of what their long range plans are gonna look like or what their short range wines them. So, you know, when somebody comes into your office, you have impact.

And I felt that way. And I still feel that way for my typical clients. I feel like within an hour I can shift. Somebody whose trajectory quite a bit in special needs planning. And so it is an area I think, for high impact for families that go and do it. There’s lots of people around the country like me.

Um, and then just professionally, for me, it’s very exciting to see how quickly I can help people.

David Hirsch: Yeah, well, it’s not lost on me. I’ve been a financial advisor for three 35 years, and I want to say I’ve seen it all, but you know, this is what the third bear market that we’re living through in the last 20 years.

So you know what to do, right? It’s not a surprise. Maybe the catalyst for the bear market is different each time, but you know, there’s certain things that you just absolutely need to do. And. In a financial crisis of sorts, you know, adequate cash reserves, make sure that, you know, you’ve got good diversification, high quality investments and, you know, make sure you can Batten down the hatch, not just for months, but potentially years.

And I think what I’ve heard you say, Rob, you’re uniquely qualified. To work with not just to be local families, you know, ordinary wealthy families, but, um, what you bring to the table from your own personal perspective, you know, having a child, Sarah specifically, you know, with special needs, you, you can immediately connect right on a, a different level than just an ordinary financial advisor, perhaps like myself with a family.

And there’s that trust level, there’s that, uh, sort of. Commonality, the shared values that you have, right? It’s not like it’s this special group of people, but there’s that commonality that I think helps put people at ease. You’re not just a professional doing this from what you’ve learned, you know, from books and experience, but you can really relate.

On a different level to what families are going through. So I think it’s fabulous. I suppose I actually enjoy working with families, myself who have different challenges and it’s not just special needs, but, uh, you know, when there’s other challenges that might not be defined as special needs, you, you can really make an impact.

Like you said, So, um, you made reference to, uh, your writing and from what I, I recall you have two books, one that came out in 2015 called protect your family. And then more recently in 2017 financial freedom for special needs families, nine building blocks to reduce stress. Preserve benefits and create a fulfilling future.

So what was it that motivated you to start writing as opposed to just hunkering down, being the dad best dad you can be and you know, the professional career, which can obviously be very demanding.

Rob Wrubel: I wish on some level I didn’t have to. Right. But there’s some part of me that feels like I just need to keep writing that different thing.

And so if I look back to, even if I was in college, I didn’t have to write a piece of it, but I wrote a thesis. I started a bicycling magazine thinking I was more on the sales side than I was on the, uh, uh, the editorial side in my dad’s business when I had work. But of course publishing a agreement magazine you write as well.

And so I would write a monthly piece there too. And then, uh, when I changed over to financial services, the. I didn’t actually write per period of time. And then when power was born, I thought, how do I, yeah, my not just my message ad actually I had to get the technical information out to people. And as soon as they could, I started writing newsletter.

So I learned something and I put it in a newsletter and it might be 600 words. It might be a thousand words on my website. There’s a whole bunch of my newsletters, but I’ve never been writing these letters for a decade or more at least. And so probably 15 years, if I really look back on it, And they might be intermittent, but anyway, there’s something in me that just enjoyed the creative process.

And so I felt like I had to do that. And then there’s, there’s a clear need, I think, in the market. And there’s a few more now, but when Sarah was born, there just wasn’t anything great out there. A couple of books, one that does a nice job describing sort of what the timelines are going to be and how to prepare for those.

But I kind of felt like there’s Dave Ramsey for getting out of debt and Susie or mine for whatever she does. And a there’s a smart women finish rich, you know, So different categories and it just didn’t feel like there was a great book in our category. And so in addition to the, just my interest in writing, I thought like, let me put one together.

And the first few versions of it, frankly, were awful. I didn’t have a strong theme around it and I didn’t publish it. And I just, there’s always a back burner issue. As I was raising my children, never had enough time points of thing come together. And then, uh, my first book, which is really about term, why I think term life insurance is better for most people.

Although again, every situation is a little bit different with the result of one phone call. A woman called me from a Virgin islands, found me somehow. I don’t even remember how at this point. And, um, and we were talking through and I said, you know, I need to just get this down. And I was writing an email to her, turned into a very short book.

South published it. Got it going. And then really, I said, Hey, I need to get this next one down and spend the next year doing that. And it’s the process that I use with families. And when I talk and educate and do workshops for people and that scene that if people can just follow some very simple steps, sometimes hard to do for people, but very simple steps that are clearly laid out.

Then, um, they took themselves in a much better financial and legal shape. And so I was just trying to get the work. I already done it out there and I think I did a nice job with it.

David Hirsch: Yeah, well, I have a copy of your book and I’ve looked through it. Um, I, I think it’s very well laid out and it is, uh, a plan, right?

Not a financial plan, but it’s a sort of a blueprint as the way I think about it. And it is broken up in nine chapters and I think it’s sort of easy to digest. And in the first chapter, you talk about a dream about the future and, um, you, you make reference to this one hour. Can change your life. So why don’t you expound on that?

Rob Wrubel: Yeah. And again, some of this is from talking to other people, some of it’s from personal experience, I live a couple blocks from a park that I go run in on a regular basis. And, uh, around the time that this book was coming together, even before the first version of the book was coming together, I go for my runs in the park at some point.

And that’s how I think through things. But at some point I said, you know what? I need to take some time for myself, but three kids at home. Yeah. Yeah. Lots of stuff going around with my now ex wife and new, fairly new in this career. So I go to the park and I would sit for 10 or 15 minutes. I didn’t always get to an hour and take some time for myself to think, all right, what is it that I want next?

What, how can I be intentional about what’s happening? I’ve read enough books and I’ve listened to enough people saying, you know what? Sometimes life just goes by and people look back and they’re not happy with where they are. Sometimes people are lucky and they just accidentally hit every Mark that they wanted in a way.

The promotes people, the way you make changes to sit down and decide what changes you’d like to see happen and put yourself in that direction. So for me, it was very important to have that time to sit down and then I realized why it’s a full hours. You need to think through it, and then you need to start.

I felt people needed, write it down. There’s a lot of information out there about writing down goals and how important they are and having those goals present in front of people on a regular basis. The other part of it is people would very often come into my office and they’d have a collection of financial products that didn’t always make sense.

And they had no theme to them. They didn’t have any direction to them until very often that one hour they would spend with me was the first time in their lives. Anybody had asked them the question of what do you want to do with your life? Have you want your children to be, do you want to support them in college or not?

Do you want to support them in a trade or not? In the special needs world. How are you planning for that kind of future? What you, what does retirement look like? What is, what is three years from now? Yeah. So a big part of the work you do and that I do is just giving people some space to dream a little bit and think a little bit.

And then, and then we’d come back and put some structure around that for them. And so what I realized is that very often at one hour, somebody, if people would do it on their own, that’s even better. Because then when they come to us, we can have a more detailed conversation. But sometimes that one hour with me was the first time they’ve even had permission to think about what they want to do with the rest of their lives.

And how do they want to raise their yeah. Children the right way? Have what kind of people do they want to be? And again, we’re talking financial stuff, but you know, very often financial success comes from people that yeah. Have decided where they want to go and are comfortable getting there and their messages have to change a little bit.

So that one hour, and that first part of the book is really just about thinking, where do you want to go? And what priorities are you going to take?

David Hirsch: Yeah, well, I think it’s a great way to start the book and it’s an invaluable process that, uh, you’re making reference to.

Rob Wrubel: And I know that

David Hirsch: everybody could benefit from it and especially families raising a child or children with special needs.

So switching gears again, I’m wondering what role spirituality has played in your life.

Rob Wrubel: Good question. So remember I was going back, I studied Chinese history and religion. At the end of the day, I was a religion major. Um, I grew up in a Jewish family. I got bar mitzvah and there’s some great, um, rituals and times that go with that still that we, we celebrate just not as much as I used to, or my ex wife that until I don’t think I have a specific, uh, venue for spirituality.

That being said, I do think it’s important. To understand on some level that life is bigger than just what we do every day. It’s more meaningful. Some of that meaning comes from how we treat ourselves than other people. Some of it comes from walking outside and seeing the splendor of the sky and the trees, part of why, if I were in Colorado and just feeling like, uh, that we’re on a path that’s bigger than us.

So I don’t, I don’t know, have any specific way that I exercise that, but that’s just sort of the core of who I am. Great.

David Hirsch: Thank you. So I’m thinking about advice and I’m wondering if there’s any important takeaways, additional takeaways that come to mind when raising a child or children with differences.

Rob Wrubel: So there’s, it’s divided into two categories. Again. I mentioned this before. There’s some technical advice and then there’s, um, I suppose, life advice or what I’ve learned advice. And I do want to make sure that anybody listening that might have a family member, who’s got a disability understand. On the technical side, there’s a program called SSI supplemental security income.

And at age 18, a person with a qualifying disability who does not have more than $2,000, his countable resources qualifies for an income check. And it depends on there’s a federal amount and some state supplement and that’s 780. I can’t remember what it’s for 20, 20 more importantly, SSI as a gateway to Medicaid and EV and people think of Medicaid just as health insurance.

Uh, for people whose income is under a certain math, but there’s a whole range of other Medicaid funded services that are available pending on your community and your state that can be worth tens of thousands of dollars easily a year, or somebody has significant fees, a hundred thousands of dollars a year.

So my case when my daughter turns 18, she can’t have more than $2,000 in her name. And so I have to make sure that I don’t create assets in her name, like Kevin Atma or five 29 plan. So she can’t have more than $2,000 in her name. When I die, there is a very special kind of trust public supplemental needs trust that can go into money for her.

It’s different than if she had one in her own name and that money can be used to support her for a higher quality of life than what you’ll get from SSI and Medicaid. And so people need to listen. You need to really understand that it makes a big difference for you to get on and get movement and speed matters here.

We never know, especially in these times what our health situation’s going to be like. You haven’t put this in place. Do it. When I speak to groups, I take 50% of the groups have heard of a supplement or a special needs trust, 10 to 20% have done anything about it. It’s a family on the house or a condo has a retirement account.

Any life insurance, more likely than not. They need to have their state plan done and do it quickly now again, abs and all the other pieces of the plan. That’s still okay. But, uh, if you’re not sure exactly which steps to take, get the book, get the first parts down quickly, get special needs, trusts in place, saving and investing, getting it right.

It takes a lot longer. So that’s the technical stuff that people just really need to get moving up. And unfortunately, I don’t see enough people doing it. Um, the life aside. You know, life just keeps coming at us in different ways. And, uh, and I see it with frankly, people that are retiring too. We don’t know where it’s always going to go.

So appreciating every day obviously is very important and then acting quickly when we get new information, it’s very important to what I keep learning more and more and more. So again, my daughter has one more year of high school starting now to look at what’s going to happen afterwards. When we get to this time next year, it’s going to be fast and it needs to happen quickly in terms of what programs are we going to choose?

What’s going to happen? How am I going to apply? And there’s no reason for me to wait when that stuff happens because her life will be better if I can act quickly. And so that’s a big piece of it. But again, like I said, I’ve learned from her so much to enjoy moments and appreciate days, and then that’s as important as anything else that we do on the investment side.

David Hirsch: Yeah, well, words of wisdom. And if I were to just paraphrase, summarize on a very

Rob Wrubel: high level,

David Hirsch: be intentional, right? Educate yourself. Be intentional, make decisions, you know, before we’re thinking about things. So I’m sort of curious to know why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?

Rob Wrubel: If you think back to the initial part of our conversation, that there was that moment when my daughter was born. And there was an entire community of people that was invisible to me and how much I got out of that from talking to so many different people. It might’ve been five minutes here. It might’ve been an hour there, whatever it was, my life was so much better.

Again, going back to both intentionality and speed of being able to speak to other people who have lived it already or who could connect it to people. I do. And so I understand where I came from on that. I understand that sometimes people we’ll just need, again, sometimes it’s a 15 minute call to say, what do I do next until I’m happy to do that.

I do that on a regular basis when I speak to people or when I’m out. And I just enjoy me and hearing and talking with other people. But on some degree, I suppose, I feel like I have an obligation to give back as well. And it’s a positive obligation. Yeah. Yeah.

David Hirsch: Well, thank you for sharing. Thank you for being part of the network.

We’re thrilled to have you, what a great resource let’s give a special shout out to Don Trembley for helping connect us.

Rob Wrubel: Yeah. Thanks Don. And Don and star also worked great together. So yeah.

David Hirsch: If somebody wants to learn more about your work at cascade investment consulting. About your book about the writing that you do, what’s the best way to contact you?

Rob Wrubel: Yep. There’s two different ways to get in touch with me. And thanks for asking. They can search cascade investment group. That website is ciginc.net. Uh, Bill Gates happens to have a family group called cascade investments. Something, we get calls all the time. We’re not Bill Gates. So please stay away from that one.

We actually have the phone number for people that call, but we get it all. It’s really funny actually. Um, but for people that are more interested in the special needs, specific kind of stuff, and where I post most of my emails these days, they can go to Rob rubel.com. Let me spell that on. Cause nobody ever gets that right.

Either. robwrubel.com. So easy enough where they can go to Amazon and get them booked in Amazon. Excellent.

David Hirsch: We’ll include those in the show notes as well. Rob, thank you for taking the time and many insights. As a reminder, Rob is just one of the dads. Who’s agreed to be a mentor father as 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 data dad podcast. I hope you enjoyed the conversation as much as I did, as you probably know that 21st Century Dads Foundation is a 501 c3, not for profit organization, which means we need it to keep our content to all concern.

Would you please consider making a tax deductible donation? I would really appreciate your support. Please also post a review on iTunes, share the podcast with family and friends and subscribe. So you’ll get a reminder of when each new episode is produced. Rob, thanks again.

Rob Wrubel: I appreciate it, great to get to know you and thanks for all the work you’re doing.

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.