Our guest this week is Rob Billerbeck of Lakewood, CO who works for the National Park Service in Colorado.
Rob and his wife, Sarah, have been married for 27 years and are the proud parents of three children; a daughter, a son who has Down Syndrome and a third who is non-binary.
Rob reflects on being the 9th of nine children and the impact that losing a sister in a car accident and a brother to suicide. Rob also reflects on the challenges they have encountered as parents, the organizations that played an influential role and very humbly, how his children have been his greatest teacher.
That’s all on this episode of the SFN Dad To Dad Podcast.
Email – email@example.com
Global Down Syndrome Foundation – https://www.globaldownsyndrome.org/
Mile High Down Syndrome Association – http://www.mhdsa.org/
The ARC of Colorado – https://thearcofco.org/about/
Tom Couch: [00:00:00] Special thanks to Horizon Therapeutics for sponsoring the Special Fathers Network Dad to Dad Podcast, working tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics’ mission at HorizonTherapeutics.com.
Rob Billerbeck: I guess I feel vigorously as a father. That’s been another lesson for me and that I will defend it to my dying day, that if someone internally feels that their gender is different, we need to respect that. I would say that’s the lesson all three of our kids have taught us is to let go of what our image was and get to know the kid that is in front of us, get to know their identity as they see it, they define it.
Tom Couch: That’s our guest this week, Rob Billerbeck. Rob and his wife, Sarah, have three children: a daughter, a son, and a third who is non-binary. Rob is also the [00:01:00] Colorado River Coordinator for the National Park Service. We’ll hear his story and about his heartfelt connections to the special needs community. That’s all on this Special Fathers Network Dad to Dad Podcast. Say hello now to our host and the founder of the Special Fathers Network, David Hirsch.
David Hirsch: Hi, and thanks for listening to the Dad to Dad Podcast, fathers mentoring fathers of children with special needs, presented by the Special Fathers Network.
Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children connect with mentor fathers in a similar situation. It’s a great way for dads to support dads. To find out more, go to 21stCenturyDads.org.
David Hirsch: And if you’re a dad looking for help or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to Facebook.com, groups, and search “dad to dad.” Lastly, we’re always looking to share [00:02:00] interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@21stCenturyDads.org.
Tom Couch: So now let’s hear this intriguing conversation between Rob Billerbeck and David Hirsch.
David Hirsch: I’m thrilled to be talking today with Rob Billerbeck of Lakewood, Colorado, who works for the National Park Service in Colorado and is the father of three children. Rob, thank you for taking the time to do a podcast interview for the Special Fathers Network.
Rob Billerbeck: You bet. Thank you, David.
David Hirsch: You and your wife, Sarah, have been married for 27 years and are the proud parents of three children: a daughter who is 22, a son who is 20, and your youngest who is 17. Let’s start with some background. Where did you grow up? Tell me something about your family.
Rob Billerbeck: Sure. I grew up out east in Maryland, Silver Spring, Maryland, in the suburbs of DC. I was the youngest of nine kids. A Catholic family there, very religious. And interestingly, my parents thought they couldn’t [00:03:00] have kids, so they adopted three. And then Mother Nature kicked in and they had six more.
David Hirsch: [chuckles] And you’re the caboose.
Rob Billerbeck: I am. The youngest.
David Hirsch: So what’s the perspective from the last car?
Rob Billerbeck: There used to be a Campbell’s Soup commercial where there were a bunch of kids sitting at the table and the bowl was passed down. And when it got to the youngest kid, there was no meat left in the bowl. [David laughing] So I am the least picky eater of anyone, I think. I’m not picky about what clothes I wear, and pretty okay with life on things like that.
Certainly the experience taught me to work hard. Some youngest kids get spoiled. That wasn’t my experience, but it did teach me to maybe not expect too much or demand too much, I think.
David Hirsch: Yeah, I can only imagine. Out of curiosity, what’s the age range from the oldest to yourself?
Rob Billerbeck: Yeah, so my oldest sister, Kate, is 15 years older than I am.
David Hirsch: Okay.
Rob Billerbeck: Yeah. And her oldest daughter is only three years [00:04:00] younger than me. It’s weird to have a niece that’s over 50 now. That’s very strange.
David Hirsch: That’s wild. I’m curious to know, what did your dad do for a living?
Rob Billerbeck: Yeah, he was an aerospace engineer. A rocket scientist. [David laughing] He worked mainly on satellites, but he also worked on things like Sidewinder missiles and the Titan missiles. I have a box of his awards. He worked on some aspect of the space shuttle. He worked on how to refuel airplanes in flight, which is a crazy engineering feat.
David Hirsch: And did I remember that he was also a World War II veteran?
Rob Billerbeck: Yes. He served in the Philippines at the end of World War iI.
David Hirsch: And how would you characterize your relationship with your dad? Did he have any gas left in the tank for number nine?
Rob Billerbeck: He did, I had a good relationship with my dad. When I was little, I remember him building model airplanes with me and helping me with homework. He traveled a [00:05:00] lot for work. So my mom took care of a lot of things while he was away. A lot of drama always happened when he was on a trip. And then in teenage, the thing I hated most about my dad was him giving me advice. And then later in life when I had kids, the thing I most liked about my dad was him giving me advice. [both chuckle] In his latter years, I really got to know him a lot better and got very close to him in his last 15 or 20 years and really miss him these days.
David Hirsch: Yeah thanks for sharing. And I’m wondering if there’s a lesson or two, or perhaps something that you’ve tried to incorporate into your own fathering as a result of your dad.
Rob Billerbeck: I guess I I’ve learned what it’s like to have it all flip back on me. I think my youngest who is 17 is definitely in the phase of not liking any advice from me, so I’m trying to roll with that and remember what I was like at that age and hope that later in life [00:06:00] I can offer more advice when maybe they want it.
David Hirsch: So I’m thinking about other father figures and I’m wondering what if any relationship you had with your grandfathers, first on your dad’s side and then on your mom’s.
Rob Billerbeck: Yeah, I never really knew my grandfather on my mother’s side. He was a doctor but he passed away when I was very little. But my grandfather on my dad’s side ran a nursery, so he sold plants and I knew him a little bit. Interestingly, in my career as a biologist, I spent a lot of time learning about plants and wished my grandfather was still alive when I was doing that. It would have been cool to interact with him then, but unfortunately he had passed away by the time I began to love plants.
David Hirsch: Very interesting. If my memory serves me, your grandfather Billerbeck was in World War I.
Rob Billerbeck: Yes.
David Hirsch: And he wasn’t in what I would think of as a traditional branch of the military.
Rob Billerbeck: [00:07:00] Yeah, he trained to be in the Balloon Corps and throw bombs out of balloons. So the equivalent of the Air Force in World War I.
David Hirsch: Yeah, thanks for sharing. Candidly, I didn’t even know there was a Balloon Corps.
Rob Billerbeck: Yeah.
David Hirsch: Right? Like that would be something that people would be doing, throwing bombs out of balloons. But I imagine if somebody were to Google that, there’s probably some rich information about it. Any other men who might have played a positive adult male role model figure, father figure in your life?
Rob Billerbeck: Yeah, one of my brothers Jimmy, he was my second oldest brother. And he struggled a lot from early teenage with drugs and alcohol and went through a very difficult period after really disrupting the house many times. My parents really had to go through a phase of not allowing him in the house. He had a period of living on the streets where they weren’t sure how he was doing. They tried to get him help and treatment, but as can happen with [00:08:00] addictions, it takes wanting to get better. And so he did go through a very difficult period and then came back around and recovered. And recovered fully. And even came back and lived with us and completed college with straight A’s and he was a very smart guy. And in some ways I think he was my mom’s favorite. She I think looked at him as the prodigal son. After being away and having struggles, coming back to live with us and succeeding was a really big deal. And I think for my dad as well.
Unfortunately, he had blown off part of his hand when he was a teenager. He had gotten into making bombs for kids in the neighborhood to use for fun things. And at the same time was using a lot of marijuana. And he messed up the order of steps. And drilled into a pipe bomb after having loaded it with explosives. And he blew off part of his hand. And so [00:09:00] later in life he had no feeling in some of his fingers. And so he wanted to get surgery in order to get back feeling in his hand. Went through some surgery and they rerouted nerves, but unfortunately, despite really working through some alternative pain processes, he ended up being given painkillers at the hospital against what was supposed to be his treatment plan. And unfortunately, he went back into addiction. And when I was about 16, he took his own life. So that was a very difficult thing for me to lose my older brother and has shaped some other parts of my life. It’s really hard to see someone you love in pain and it’s exceptionally hard to see them take their own life. So that’s definitely something that shaped a part of my life and gave me a lot of understanding of the pain and the struggle of people with addictions.
David Hirsch: Yeah, thanks for sharing. It’s a very [00:10:00] touching story and I can’t even imagine what that must have been like as a teenager. You looked up to him because he’s so much older than you, ten years older than you, and the sort of 360 experience that he had. Being in the house, being out of the house, going through all the challenges that he had. And then, putting that all behind him. Going to college, doing really well, straightening himself out. And not everybody is on a straight line. I don’t know too many people that could say that they had the similar experience to what you just described as Jimmy’s experience, but it is pretty remarkable that they would be able to dig themselves out of that hole that he had created. And it is even sadder to learn that that addiction came back and took his life. And it must obviously put things in perspective for the fragility of life in and of itself.
Rob Billerbeck: Yeah, I mean it was certainly very hard for me to get through. I was very mad at him for a time. Such a waste of potential. And [00:11:00] it made me question a lot and I certainly watched my parents struggle. Losing their child, especially after having him come back and be succeeding was brutal for them. I think their faith got them through. I don’t experience faith the way they do. I have a different type of relationship with our church and with spirituality than my parents, but I know for them it was a backbone that helped them through.
David Hirsch: So my recollection was you did your undergrad in conservation biology at University of Maryland and I’m wondering where did your career take you from there?
Rob Billerbeck: I worked a little with a project in Brazil with chasing monkeys around in the jungle a little. And then a lot of computer modeling. And then I worked briefly in California for a land trust on the coast, and then I went to Colorado.
Colorado is [00:12:00] where I fell in love with the west. My first trip west was when I was 21 and I found the two great loves of my life. I found Rocky Mountain National Park, which blew me away and then a little later in the trip I found a 20-year-old woman who had a flat tire and she is now my wife.
Both of those things brought me west. I had a few chance meetings with my wife after the tire. It was a bit of fate that I was able to stay with her. Yeah, so we eventually relocated to Colorado. And I worked for Colorado State Parks for a number of years and now work for National Parks as their Colorado River coordinator.
David Hirsch: Thanks for the brief flyby from a career standpoint, but you piqued my curiosity about how you and Sarah met. You were going across the country, apparently?
Rob Billerbeck: Yeah, myself and a friend of mine that I worked with had [00:13:00] aspirations to travel across the country. I had a girlfriend at the time in the Air Force Academy, so I wanted to visit Colorado and see her, and then we wanted to go to Alaska. As it turned out, my now wife, her parents were divorced and she was moving from Denver to San Francisco, but she had a boyfriend in Seattle, so she was going to travel from Denver north, see many of the national parks, and then eventually end up in San Francisco.
As it turned out, we both ended up on the same route from Denver north, seeing Rocky Mountain National Park and then heading further north, seeing Yellowstone. And then traveling up through Montana and Idaho and then on to Washington State.
And it was a very hot day in Washington State with dust devils on the side of the road and many cars overheated. And my friend and I literally said it’d be nice if there were some girls broken down [00:14:00] by the side of the road and we could stop and help them. [David laughing] Crazy as it is, over the next hill, there were. We pulled over, stopped, and changed their tire. They invited us into Seattle, and we had dinner together with the two girls. And, of course, the one I liked invited her boyfriend. So he came and joined us for dinner. And so I thought that wasn’t gonna work out. But, as it turned out, we stayed at her aunt’s house, slept there for the night on the floor, left them a thank you note, got up, drove away.
We tried to find a ferry to Alaska and found they were too expensive. So we spent a few days around Seattle. And at a stoplight, someone honked behind us, and it turned out to be the two girls. Things had not worked out so well between my wife Sarah and her boyfriend. They were breaking up and we ended up spending the day together and having a really good time.
But still, I had a [00:15:00] girlfriend, she was still working things out with her boyfriend. We parted ways again. But she offered that I could drive her car to San Francisco if I wanted to expand my trip. And then my girlfriend at the time in Colorado broke up with me. Whole bunch of coincidences, but I drove out to San Francisco and the rest is history.
Three chance things there that would have made my life very different if they hadn’t worked out how they did. Very fortunate that they did because she’s been an amazing woman to be with for 27 years. She’s got to be amazing if she put up with me for that long. I know she’s had doubts. [laughs]
David Hirsch: Let’s switch gears and talk about special needs, first on a personal level and then perhaps beyond. And I’m curious to know, before becoming parents, did you or Sarah have any connections to the world of disability or special needs?
Rob Billerbeck: Yeah, [00:16:00] growing up I had a cousin who was cognitively disabled, and I really didn’t know a lot about it. We didn’t spend a lot of time with them, so I have to say I, looking back, wish I had more understanding and more time to get to know my cousin with cognitive disabilities.
And then later in life, the first job I worked was at a civil engineering firm. They ended up hiring a guy with cognitive disabilities to run the blueprints. And I do remember thinking that was a great opportunity for him and he did a good job. He worked really hard running the blueprints at the time before the computer age took over. We ran a lot of blueprints and he did it with a smile on his face. But I do remember a few struggles with people that gave him a hard time and I remember getting very mad at those people.
And then my experience after that was really my son. He was our second kid and [00:17:00] we didn’t know he had Down syndrome until a day after he was born. We didn’t really have a lot of time to prepare or learn about it.
David Hirsch: Thanks for sharing. Let’s talk about each of your kids, in birth order, if you will.
Rob Billerbeck: Sure.
David Hirsch: Your oldest is a daughter, and I’m wondering what’s your experience been, or what has her experience been?
Rob Billerbeck: My oldest daughter is an amazing kid and was very precocious. But also the sort of kid who at age five or six cried when she heard about climate change and was sad for the planet. So she’s always been a kid with really deep feelings about the world, about people, very empathetic. I guess I’ll tell a little bit more about her and then come back to some lessons she’s taught me. And that’s the way I guess I think of my kids is they’ve all been an educational experience for me. I’m still learning.
But my oldest really struggled when she got to high school with self-image and developed an [00:18:00] eating disorder, anorexia, and really almost died as we got it diagnosed at first. She lost weight at a very rapid rate. We struggled with insurance to get her in a program quickly. We were able to at Children’s Hospital in Denver, which had a great program. Some amazing caregivers there with the hardest job in the world. I wouldn’t wish on my worst enemy that they would have a kid with something like an eating disorder. It’s a very hard thing and it was a very hard road of recovery for her. She had to relearn her relationship with food. It was akin to watching someone having to learn how to eat handfuls of spiders. That’s how hard it was for her. And she’s the bravest, most amazing person I know.
We struggled as a family for how to help her through it. [00:19:00] And it took her over. It really was a disease that took over her brain, turned her into a very different person. She did recover. She made it through high school, went on to college. And then struggled with alcohol. And one of the many lessons I’ve learned is the eating disorder wasn’t about the food. The alcohol disorder wasn’t about the alcohol. It’s about her feelings about herself and her ability to cope with difficult feelings.
And I would say those are lessons that I’ve had to learn as a person and she has helped to teach me a great deal about that. And she’s now doing great. She has spent many years going through a lot of therapy, finding some medications to help. And her bravery, her strength is amazing. I’d have to say she is one of the strongest, most [00:20:00] compassionate, empathetic people that I know. The kind of friend she is to her friends, I wish I could be that good of a friend. She’s a great person and I love her and she’s amazing.
But If I could go back in time when she was little, I would have been way less worried. I spent a lot of time teaching her many things, and I think I failed to teach her those two biggest things – about how much there was to love about herself, and about that you can’t avoid difficult feelings. You have to live through them. You can’t avoid pain. You have to experience pain. And that’s hard as a father to watch your kids experience pain, but I think I should have done a better job of learning that myself. I’ve gone through therapy but I wish I had early enough that I could have provided some better lessons to her that way. That’s my experience with my oldest.
David Hirsch: Wow. There’s a lot to unpack there. Thank you for [00:21:00] reflecting. It sounds like it’s been quite a journey and I don’t know that I would have mentioned this to you but coincidentally my oldest daughter, when she was about the same age at 16, during high school, got sick. Ate something and got some type of serious gastronomical problem when we were traveling internationally. Lost 20 or 30 pounds. Was bleeding internally. ICU for a week. And we had no idea what was going on. And it was something like a switch in her brain flipped. And Mom, I need some new clothes. My clothes don’t fit me. And then something, maybe psychologically, was being reinforced. Oh, you look so good. She just embraced that new person, that person who [00:22:00] was skinny as a rail. Her hair was falling out. She was bruising easily. This anorexia diagnosis caught us quite off guard. And had to pull her from school, get into a treatment program. And you’re right. It’s not about the food. It’s about control. At least in our daughter’s situation was. And she’s super bright. And I don’t know if she’s a perfectionist, but maybe there’s some of those tendencies too. And it took years and years to work through that.
The good news is she got back into high school, went to college, did really well in college. Got some good jobs, and now she’s a second year resident in radiology. But as a result, I think, like your oldest, she has a better appreciation and understanding for others and some of the challenges that people go through having some consequential lived experiences herself. And no doubt that makes you more compassionate and empathetic [00:23:00] toward others. So there’s a lot of lessons like you were suggesting, Rob. So again, thanks for sharing.
Tom Couch: We’ll be back with more of the conversation on the Special Fathers Network Dad to Dad Podcast in just a few moments. But first, this quick message. Please help 21st Century Dads gather research on families raising children with special needs by having them complete the Special Fathers Network Early Intervention Parents Survey. A link to the survey can be found in the show notes. As a token of our appreciation, each person, mom or dad, who completes the survey will receive a Great Dad Coin. Thank you. Now, back to the conversation.
David Hirsch: Let’s jump to number two, your son, your middle child. And you mentioned earlier that you didn’t know about the Down syndrome diagnosis until the day after he was born. So how did that transpire?
Rob Billerbeck: So he was our second and was the least complicated [00:24:00] birth that my wife had of the three. So we were celebrating when he was first born and holding him up and we were very joyous. It was a great moment in our life. I couldn’t have been prouder as a dad and didn’t have a clue that there might be any difficulties at all. But they took him away to the nursery and left the two of us alone in the hospital room for a while.
My wife was exhausted, so she fell asleep. And the doctor came back – and by then it was night – to talk with us. Being woken up in the middle of the night and being told that our son had Down syndrome and that he had pulmonary hypertension and they had him on oxygen and they weren’t sure yet if there were any major defects in his heart.
And for us I would say that was a crushing blow. We, at the time with the way it was presented, weren’t sure if he would live through the night because it was [00:25:00] presented in such a grave manner and with a lot of unknowns. I’d have to say the hospital staff didn’t seem very up on Down syndrome trisomy 21. Didn’t present us with very much information. In fact, one of the nurses copied out of an old 1950s dictionary the term “mongolism” and gave it to us as a way to understand it. Have to say we provided them some much better information after that years later to try and make sure that they never presented the information that way to new parents.
We’ve heard many stories from others about the difficult challenge of the way it’s often presented. For new parents now, I would hope that they would be presented by the doctor with a fair assessment that this may have a lot of challenges to have a kid with a chromosomal difference. But also, to celebrate with them that they have a kid. My son is an amazing [00:26:00] individual that I love with my whole heart and I am so proud of.
In many ways I wish the medical community would understand that having a kid with special needs is not something that you should pity people for. Yes, it is a challenge. It is a unique challenge. And again, if there had been a choice that day to flip a little switch and take away his disability, I bet I would have done it. Now, it’s very hard to imagine, because if I were to take away his disability, he would be a completely different person.
And I would have to say, through a good part of his life, there were many times where our comment was, the person with special needs in the family changes from day to day. [both chuckle] The one that’s the most challenging kid changed from day to day. There were many times where my son was not the hardest kid of the three. Maybe not even the hardest person in the house of the three, to be [00:27:00] honest. My wife and I certainly had our days. So I’ve learned a great deal.
We did a lot of sign language with my son and I had the pleasure to learn sign language. And that really helped him to be able to communicate when he was little. And then he switched over to verbal language almost instantly because it built that language pattern for him. That was a super useful thing for him. And his first sentence was “Daddy play ball.” That was his first three words. And as a dad, I gotta say I was happy.
David Hirsch: It just gave me the chills. It gave me the chills when you said that. Yeah.
Rob Billerbeck: My wife was a music teacher. His first series of verbal words was a song, Five Little Monkeys Jumping on the Bed. So she got that. But I got the “Daddy play ball” with the sign language. Like many things he has taught us, there is a place of balance. We pushed ourselves and him with a lot of therapies when he was younger. And similar to my lesson with [00:28:00] my oldest if I could go back a little, I think I would tell myself, it’s okay. And the most important thing is indeed the love to give him, and to give him that sense of confidence in himself, rather than focus purely on therapies to try and fix him, or teaching him to read and write, which he can do very well. And his self-worth, his feelings about himself may be the most important thing. And I wish in some ways I could have conveyed that more. And that’s definitely my focus at this point in life is to show him how important he is.
David Hirsch: Thanks for sharing. So you’re not just the father of two children, you have three children. And I’m wondering what’s the backstory on number three?
Rob Billerbeck: My youngest kid is – I know everybody says all their kids are amazing. [David laughing] And apologies, I’m gonna get choked up a little. My third kid is just as amazing as the other two. They are super [00:29:00] bright, super self-starter. We joke that our third kid raised themselves a good bit. Our first kid, we brushed her teeth until she was probably well beyond the age at which we should have been doing that. But we hadn’t been parents before and didn’t realize that she could do it herself. Whereas the third kid, it was like one day we just looked down and there they were brushing their own teeth. And it was like, wow, did you teach them that? No, they must have learned how to do that themselves. So they are a self-starter who’s always been very independent, much more private person than the other two. And we think part of that has to do with their gender. They see themselves as non-binary.
We were at a very difficult time with our other two kids, particularly with our oldest, who was going through an eating disorder, when our third kid came out to us and told us that they didn’t feel they fit in either gender box. [00:30:00] Biologically they were born female, but they didn’t feel like they fit in either male or female and thought that they were best described as non-binary. They chose a new name at that time and they chose new pronouns. They/them/their pronouns.
David Hirsch: At what age would that have been, Rob?
Rob Billerbeck: They were 12, I believe. We asked them do you like boys or girls? Do you want to date boys or girls? And they were like, ooh, I don’t want to do that at all. It’s not about who I like. It’s about how I feel. And so that was interesting for us to learn that difference between gender and sexual orientation, that they’re two different things. And really they just didn’t think they fit in either the boy or the girl box. So like I say, this was at a very difficult time in our lives and I, in some ways, feel like I hope I didn’t short them the attention that they needed at that moment. I feel like we’ve been very supportive, but it was a little bit [00:31:00] of a challenge to adjust to and to learn what that meant to them and to deal with other people’s reactions and confusion about it.
And we misgendered them for a while. We would struggle to adjust to using they/them/their. Some of the grandparents had reactions to that. For a while, didn’t want to use the new pronouns or argue that they weren’t correct grammatically. And we’ve pointed out to people, when you see someone from behind and you don’t know whether they’re male or female, you refer to them as they. That’s what we do naturally in the English language. When you don’t know gender, we use they. People have said it’s plural, it’s not correct.
Actually, language should serve the purposes of our lives. Our lives don’t serve the purposes of our language. We’ve learned to adjust to that and to defend that for our kid. Defend their identity and defend the fact that every human being should get to have their own [00:32:00] identity. And it’s not an easy life to choose a path that maybe isn’t as common. There’s a whole generation of kids now who are coming out as something other than male or female. There is literally an “other” box now on Colorado driver’s licenses.
Again we know many people who fit that description now. And I guess I feel vigorously as a father. That’s been another lesson for me and that I will defend it to my dying day, that if someone internally feels that their gender is different, we need to respect that. I would say that’s the lesson all three of our kids have taught us.
We had certain expectations. There are certain things we assign to our kids. A name. A preconceived notion of their identity when they’re little. And most of their growing up, the lesson for us parents is to let go of what our image was and get to know the kid [00:33:00] that is in front of us. Get to know their identity as they see it, they define it. And I’m still learning that lesson, how to best support my kids that way. But my youngest, I will defend that to my dying day that I support who they are and I love them for who they are.
David Hirsch: Yeah, very well stated. Thank you for sharing. I think that the world is evolving and it’s not a matter of semantics. That’s what I heard you saying. And I think you do need to meet people where they’re at. And if you don’t have any experience, like you were saying earlier, you’re not a mean person or mean-spirited, but you’re unknowing or ignorant to the situation, right? So you don’t have the vocabulary, you don’t have the confidence or the comfort level in knowing how to communicate and that in and of itself can be challenging. And I thought you shared in a prior conversation, some statistics. Was it like the Pew Research Foundation or [00:34:00] something like that?
Rob Billerbeck: Yeah. When you were asking me about how common people defining themselves as a different gender was, I looked that up and I sent you some statistics and yeah, it was higher than I would have thought. Like 2 to 5 percent of young people these days defining themselves that way. And I guess I’ve taken the time to learn about it and learn that there are some biological differences in the brains of people that have been seen. And again, I respect that is their choice, their identity.
But I’ve also felt like an idiot with all three kids and felt like I didn’t know about all three of their different issues and identities. Whether it’s mental health issues and things like eating disorders or learning about Down syndrome or learning about other genders. There was a time where I knew almost nothing about all of those and I said the wrong things. I had stupid questions. And I guess I feel like for other people there are a whole lot of people out there with different [00:35:00] identities, different ways of growing up in the world. It’s okay to ask questions, even if you feel dumb. But it is really important to get to know those differences and learn to respect them.
We’ve had to go to more different support groups than we have kids. We’ve been part of five different types of support groups. We’ve gotten good at doing support groups. It’s been a real education. And it hasn’t been easy on our marriage. It certainly convinced me how little I know about life. I’ve had to grieve the loss of these kids that were images in my mind that are different than the kids in front of me. And you have to go through some grieving of losing an image of something that’s not there in order to really appreciate and love the kid that’s in front of you. And you have to educate yourself and get to know people who have a lot of differences. That’s one thing I’ve learned, [00:36:00] but I’m still learning. And I’m still learning about my own biases, preconceived notions, and stupidity, and trying to figure out how to get past it.
David Hirsch: Yeah no doubt it’s become one of your superpowers, and you’re able to look at life with a wider aperture. That’s the way I think about it. When we’re not knowledgeable about things, we’re more narrow minded. It’s like you put on a pair of glasses and you’re like, oh my gosh! I didn’t realize that there were things that I wasn’t seeing until you’re able to see or understand something. So thank you for the enlightenment.
I think you’d mentioned, too, in a prior conversation that it’s actually led to you leading some classes at the church. What was the back story on that and what is it that you’re doing in the church?
Rob Billerbeck: I mentioned growing up in a strict Catholic family, so for a while I didn’t want to be part of any church. I see myself as a spiritual but not religious person. I’m certainly more [00:37:00] at the atheist end of the scale, but very spiritual about nature and about connections between people. But my wife is a musician and a music teacher and has always been associated with churches. And now she’s the Religious Education Director for a church. So we got hooked on to that church and it was because they had really great classes for kids. It’s the Unitarian Church in Golden. And one of the classes they teach is called Our Whole Lives. And it’s a class about relationships and sexuality for 7th and 8th graders. And boy, having kids with special needs is hard on marriages. I’ve gone through a lot of therapy with my wife to learn how to navigate our relationship together. And this class, Our Whole Lives, teaches a lot of the principles that I didn’t learn until my forties, about how to communicate and have relationships with other people. And this class teaches that to seventh and eighth graders, or at least begins to teach it.
I’m sure they have much more to learn [00:38:00] about respectful relationships with the people that they might love. And it also teaches responsible sexuality, but a very open, positive sexuality. And part of that is being open to people’s decisions themselves, as 7th or 8th graders about their own genders. So it’s a class that’s very open to that.
So my youngest kid has given me a lot more credibility and understanding as I teach that class. And when I speak to kids who are defining their gender differently, I feel like I can do it much better now because of the experience of my third kid. But when I teach to kids who have questions about disabilities or have their own disabilities, my son has taught me a lot about that. My oldest daughter has taught me how to recognize and help maybe kids find some help who are struggling with mental health issues or things like eating disorders.
I feel like I [00:39:00] wouldn’t be nearly as useful in that role as a facilitator in that class if it weren’t for all the things my kids have taught me. And I hope I’m passing it along to some of the kiddos coming up through that class.
David Hirsch: Yeah you might just think you’re teaching the children, but I think inadvertently you’re teaching adults as well, and just enhancing people’s understanding or appreciation for differences, right? We’re all different, right? Whether you define it as special needs or disability or not. And that’s the beauty of it. We need to celebrate our differences, embrace them, as opposed to letting them separate us and keep us apart.
I’m thinking about advice now, and I’m wondering beyond perhaps the scope of our conversation, if there’s any advice that you might be able to offer, not specific advice, but general advice, to a parent, maybe a father, who is raising a child with special needs, not just Down syndrome for that matter.
Rob Billerbeck: For someone who’s just [00:40:00] become a parent of a kid with special needs, I would say breathe. It’s hard. Feel like it’s okay to cry. Feel like it’s okay to feel disappointed, scared. I felt all of those things. I felt like it was unfair. It’s okay to feel all those things. It’s okay to wish it wasn’t true, to wish that wasn’t your kid.
And know that you’ll get through those moments and that you will love your kid. That, like I say, while each kid will present their own challenges and kids with special needs will honestly have more challenges, there are a lot of people out there who can help you through it. And some days are going to really suck and it’s not going to be fair. And other days, that person with special needs in your life won’t be the hardest challenge that day. Someone else will. Yourself, or one of your other kids. [00:41:00] Not everybody’s dealt an equal deck in life. There is no fairness. And I know some people that have a really hard struggle. I would never knock anyone’s choices for whether to have a kid or not, if they find out they’re going to have special needs. But on the other hand, I would say I don’t regret having any of the three of my kids and all of their glorious issues that I have gone to various support groups for. I love them all. I am so proud of all three of them. Life is not for the faint-hearted. All moments in life are gonna be a struggle. Kids with special needs are one of those struggles. You’ll live through it. Be brave. Live it.
David Hirsch: Yeah, great advice. Thank you. So I’m curious to know, why have you agreed to be a mentor father as part of the Special Fathers Network?
Rob Billerbeck: Oh, I’m not sure why, David. I still feel like I am learning lessons, so I don’t want to pretend [00:42:00] to tell someone else I know the answers. But I can share some of the resources and at least a few of the things I think I’ve learned. And if nothing else, it sure as heck helps to have some other people who have been through it or who are going through it. That was important to me to have that from other people, so I hope I can share that with some others.
David Hirsch: Yeah I admire your humility, but in reality, you’ve had much more experience than the average father as it relates to different challenges. I respect that and I’m just very grateful that you’re part of the network and making yourself available. And I think as reflective as you are, you realize that there’s still some milestones that you’re going to experience going forward. It’s not like you’ve gotten to the mountaintop, you have all the answers. But you do have enough experience to realize that you are gonna be helpful for somebody who’s [00:43:00] a year into it, five years into it, ten years into it, or maybe even more. And we all learn from one another, so thank you for your commitment and being as open-minded as you are.
Is there anything else you’d like to say before we wrap up?
Rob Billerbeck: Like I say, I’m still learning lessons. I wish I could go back in time to be a better father for my kids. I’m certainly aware of some times where I’ve fallen short. But I do hope my kids know how much I love them and how proud I am of them, each of them with their journeys, the things that they have to be brave to do every day. My oldest has to be brave enough to face the world with a lot of anxiety. My son has to face the world knowing he’s pretty different than other people and the world isn’t really designed for him. And my youngest has to face the world knowing even the bathrooms aren’t designed for them. They don’t fit into the boxes. And so I hope they know how much I love them and how proud I am of them.
David Hirsch: Yeah, well, thanks for [00:44:00] sharing. So let’s give a special shout out to Nathan Warner of SEND International for helping connect us.
Rob Billerbeck: Absolutely. I’m glad I got hooked up with you, David, and I appreciate that you were interested in my story.
David Hirsch: If somebody wants to learn more about your work or contact you, what’s the best way to do that?
Rob Billerbeck: You can probably find me by Googling Rob Billerbeck and National Park Service and you can probably find me that way.
David Hirsch: Okay. I’ll be sure to include some contact information in the show notes. Hopefully it’ll make it as easy as possible for people to connect with you.
Rob Billerbeck: Alright. Wonderful.
David Hirsch: Rob, thank you for your time and many insights. As a reminder, Rob is just one of the dads who is part of the Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor father or are seeking advice from a mentor father with a similar situation to your own, please go to 21stCenturyDads.org.
Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the [00:45:00] conversation as much as I did. As you probably know, the 21st Century Dads Foundation is a 501c3 not-for-profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a tax-deductible contribution? I would really appreciate your support. Rob, thanks again.
Rob Billerbeck: All right, David. Thank you.
Tom Couch: And thank you for listening to the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs. Through our personalized matching process, new fathers with special needs children match up with mentor fathers in a similar situation. It’s a great way for dads to support other dads. To find out more, go to 21stCenturyDads.org.
David Hirsch: And, if you’re a dad looking for help, or would like to offer help, we would be honored to have you join our closed Facebook group. Please go to Facebook.com, groups, and [00:46:00] search “dad to dad.” Lastly, we’re always looking to share interesting stories. If you’d like to share your story or know of a compelling story, please send an email to David@21stCenturyDads.org.
Tom Couch: The Special Fathers Network Dad to Dad Podcast was produced by me, Tom Couch.
Thanks again to Horizon Therapeutics who believe that science and compassion must work together to transform lives. That’s why they work tirelessly to research, develop, and bring forward medicines for people living with rare and rheumatic diseases. Discover more about Horizon Therapeutics at HorizonTherapeutics.com.