032 – Special Father Bob Bjerkaas raises a child with Tourettes Syndrome and Rolandic Epilepsy

Transcript:

Dad To Dad 32 – Special Father Bob Bjerkaas raises a child with Tourettes Syndrome and Rolandic Epilepsy

Tom Couch: This is the Special Fathers Network 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 connect with mentor fathers in a similar situation. It’s a great way for fathers to support fathers.

Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids. If you’re a father looking for support, or if you’re a dad who’d like to offer support, go to 21stcenturydads.org. That’s 21stcenturydads.org.

David Hirsch: Hi, I’m David Hirsch. This is the Special Fathers Network podcast, stories of fathers helping fathers.

Tom Couch: And I’m Tom Couch. Today David talks to special father Bob Bjerkaas.

Bob Bjerkaas: One of the things about the way I’ve chosen to live my life is if I can help someone, I want to help them.

Tom Couch: Bob and his wife, Carrie are parents of four children. Christopher, Maggie, Timmy and Nate, Christopher had previously been diagnosed with Tourette’s at age four and rolandic epilepsy at age eight.

Bob Bjerkaas: Always be very intentional in spending quality time with each of your kids. As much as you can.

Tom Couch: Bob, as a pastor at church of the Canyon in Calabasas, California, he also has retinitis pigmentosa and eye disease that severely affects his vision.

Bob Bjerkaas: I have not led my disability and I haven’t led my kids disability. I don’t let my parishioners disabilities. Stop them from thinking big, huge grand thoughts about what can happen in their life.

Tom Couch: It’s a story of another amazing father and his family. Bob, David Hirsch’s guest in this Special Father’s Network podcast.

Here’s David Hirsch.

David Hirsch: Being a father is very important to me. I’ve started a number of charitable organizations designed to increase the role of fathers. One of them. The Special Father’s Network is a dad to dad mentoring program for fathers raising children with special needs. We’ve been interviewing some exceptional fathers of special needs kids, and we want to share their stories with you.

Tom Couch: So let’s get to it. Here’s David Hirsch’s interview with special father Bobby Bjerkaas.

David Hirsch: I’m thrilled to be talking today with my friend, Bob Bjerkaas of Oak park, California. A father of four and pastor of church in the Canyon in Calabasas, California. Bob, thank you for taking the time to do a podcast interview for the Special Fathers Network.

Bob Bjerkaas: Thank you, David.

David Hirsch: You and your wife, Carrie have been married for 21 years and are the proud parents of four children, Christopher 19, Maggie 17, Timmy 15 and Nate who’s 13. Let’s start with some background. Where did you grow up? Tell me something about your family.

Bob Bjerkaas: Well, I grew up in Columbia, Maryland. I’m on the second to four sons.

My parents both grew up in, uh, Minnesota and we moved to Columbia when I was five. My father took a job at the applied physics laboratory. He’s a physicist. We had a wonderful growing up experience in Maryland, Greg state.

David Hirsch: So you’re the second of the four boys?

Bob Bjerkaas: Yes, sir.

David Hirsch: What are your brothers doing now?

Bob Bjerkaas: Well, my older brother kind of took an early retirement from being the president of, uh, Colorado Heights university and in Denver. And now he works as the, not entirely sure that position title, but he’s the head of the, what in the church world, we would call the outreach department for dynamic discs, which is a disc golfing company.

And his daughter is currently a. One of the top ranked women’s professional disc golfers in the country pages. My niece’s name, that’s one. He’s also incidentally, legally blind, just like I am. Same eye disease. Oh, my next brother. He’s a Lieutenant Colonel in the army. So he’s been all over the country. And my youngest brother is following in our father’s footsteps and he’s a mathematician scientist.

And in fact works at the. Same institution, Johns Hopkins applied physics laboratory that my father had worked

David Hirsch: at. You all sound very accomplished. That’s heartwarming. Speaking of your dad, how would you describe your relationship with your dad? I

Bob Bjerkaas: would describe it as, uh, as awesome. You know, I consider my father to be one of the great blessings that, uh, God has given me.

And I feel the same way about my mother. I have my father in particular. You know, when I grew up, I’m 50 years old. Now a lot of, uh, my peers had parents, especially dads attended towards workaholism and old boys clubs were on their downtime. My father worked hard and he was an elder in the church. But years after we left the house, my older brother and I were on a fishing boat in Kentucky Lake with my dad at a small family reunion.

And we said, dad, you know, you’re getting ready to retire. We’re concerned because you never had any hobbies. And what are you going to do when you retire? And he looked at us and he said, you boys were my hobby. Well, every chance he got, he invested in us, he never missed a concert. He never missed a lacrosse game.

I know that every Saturday he reserved about four hours a day. And on a rotating basis, he kept very meticulous track. He would do something with each one of us. So we all knew when it was our turn to have that Saturday and four hours, he would have us help him work on cars. We did some finishing in a basement.

He had us help him sheet, rock, insulating, an attic. We were right there with him, everything he did. He taught us everything we did. He was right beside us. And he poured his life into his four sons in a way that is very humbling because I know how privileged that makes me a lot of boys never got to experience that from their fathers.

And, uh, and he had, it also gives me a sense of responsibility and investing in my own children’s lives.

David Hirsch: That’s wonderful. It sounds like he was very intentional about the time that he spent with each of you, if not one of you.

Bob Bjerkaas: Oh yeah. What a great lesson,

David Hirsch: what a great role model. Um, so is there any particular advice or lesson that you learned from your dad beyond what you’ve already mentioned as far as being intentional about your fathering or that comes to mind?

Bob Bjerkaas: Absolutely. I would say the greatest lesson that my father taught me and I believe my brothers would agree. He taught me and he taught to my brothers the power of grace, and I was very privileged to have a father. Who, when he, as all fathers do lost his temper came home cranky from a bad day at work. If, and when my father reacted in a way that he either immediately or later came to think was unnecessary or uncalled for, he would ask our forgiveness.

And I know how rare this is for fathers to ask their children for forgiveness. It’s exceedingly rare. And yet my father modeled for all of us boys, how we can successfully navigate as broken men and a broken world by owning our mistakes by acknowledging them, even to people that are perceived to be our inferiors, like kids are generally perceived in ops below their parents.

And he had no problem at all, humbling himself before, even as kids. I remember this David from when I was a little kid. Dad’s saying Bobby, I am so sorry. I raised my voice. Will you please forgive me now to be sure they were funny times I deserve to have my voice. His voice raised me. He didn’t apologize or rather I was apologizing, but he taught us how to say, please forgive me.

And there is no greater depth.

David Hirsch: I love it. Thank you for sharing.

Bob Bjerkaas: Yeah.

David Hirsch: So let’s talk a little bit about your education. You went to the university of Maryland. You studied music initially, and then ended up with a history degree. You have a master’s in divinity from chest Chesapeake, theology, seminary. You also have a theological masters in reformation studies at refer armed theology seminary in Orlando, Florida.

When, when you were coming out of undergrad and then educating yourself even further, what was it that was on your mind? What direction were your career pointing on?

Bob Bjerkaas: Well, Hey, if I can back up just a little bit, my whole vision for life when I was in high school was to have a military career. And I was diagnosed with an eye disease.

When I was 17, a senior in high school, I tried to enlist in the Marine Corps and my disease was a disease that runs in my family called retinitis pigmentosa. And I was permanently disqualified and I ended up going to college at university of Maryland. I never applied to go to college at all. I was depressed.

I was in a funk. I felt like my life was over. Cause I handicapped. And my band director, mr. Lou duck row said to me, Bob, you’re depressed. You’re in a funk. Why don’t you just go do this audition? There’ll be great experience for you. So I went down to Maryland. It was 45 minute drive away and I did a saxophone audition and ferns out later.

Uh, I got a call, Oh, probably sometime around March some into the principal’s office at wild Lake high school. And the principal said, Bob, someone’s on the phone. And it was L Richmond sparks the head of the music department at university of Maryland. He said, Bob, we would like to offer you a full scholarship, but you never applied.

Do you want to come to college? And so God used that band director, mr. Duck road to severely influence the whole direction of my life since then. But after I was there, I had a couple of moments as a freshman in college. If I can remember, I had the distinct thought that I’ve never really let God speak for himself.

Because there are parts of the Bible I’ve never even read. And so I decided as a freshmen in college, I was going to read the whole Bible. And in reading the Bible, I saw God’s perspective underneath of all the yuck of life and all the pain and brokenness. You find the hands of God. And so I started doing Sunday school teaching for two and three year olds and then middle school boys, cause no one wants to teach them.

And then I ended up doing senior high youth group. And by the time I was at the end of my sophomore year of college, I really wanted to go into the ministry. And that’s what drove me to going to seminary to begin with.

David Hirsch: Got it. And, uh, from what I remember, you spent about 10 years in youth ministry, another seven years as a pastor at st.

Alban’s in Vermont. And then since 2007, the pastor there on Calabasas at church of the Canyon

Bob Bjerkaas: been here for 11 years now.

David Hirsch: That’s fabulous. I’m going to take a step back. Um, how did you meet Carrie?

Bob Bjerkaas: I love this story. If dad and mom are the greatest blessing in my life, they are tied with Carrie. I met Carrie when I was five and she was three because when my dad and mom moved to Columbia, Maryland, the church they took us to was at church down in Burtonsville, a town a bit to the South of Maryland.

And we went to covenant Orthodox Presbyterian church. And there was the Williams family there. And Carrie was the oldest daughter of that family. So I’ve known Carrie and attended church with Carrie, literally my entire life that I can remember. And we, of course we didn’t date in high school. I had crushes on her on and off, but she always had the wisdom and the sense to always tell me no, and persistence pays off.

I’ll just leave it at that. And, uh, I ended up finding a way to, by the grace of God, uh, winning her heart. And, uh, as soon as she saw me, as more than just a friend, we were married within five months. Wow.

David Hirsch: That is fabulous. I love that story. So you’ve had some, uh, other, uh, challenges, health wise, in addition to being legally bind, was that diagnosis at age 17.

Did you say?

Bob Bjerkaas: Yeah, that was diagnosed at age 17 and the way retinitis pigmentosa works is you lose your vision over time. So I didn’t actually notice. Yeah, I don’t see as well until I was 19. By the time I was 20, none of my buddies would go hunt with me anymore. Uh, how it was, we were birding once and I, I fired, it was a 20 gauge Mossberg, shotgun.

I loved that gun ended up firing at right over. My buddy said, and I hadn’t seen my buddy at all, so they wouldn’t take me hunting with anymore. But then when I was 29, I was actually diagnosed as legally blind. So there’s really a whole lot that I do not see at this point, but what I do see, I see clearly now there is, that is a great blessing.

David Hirsch: So you are able to read,

Bob Bjerkaas: yes.

David Hirsch: Are you able to drive?

Bob Bjerkaas: I quit driving when I was 30, so that was 20 years ago. I just I’d run over too many mailboxes and I thought it’s going to be a pet or a kid, or I could drive in shortly after I got married.

David Hirsch: What did you do before Uber?

Bob Bjerkaas: But believe it or not, I’ve never taken an Uber.

David Hirsch: Oh my gosh. How do you get around?

Bob Bjerkaas: Well, I told you about that great blessing in my life, named Carrie all our 21 years of marriage and in all of my ministry, if I got calls and had to go to the hospital and midnight carry weight shift with me and off we go, and she’s my partner in life. She’s never even complained about it, not one time, but when I need to get somewhere and now I have two kids who drive.

So they give me rides. From time to time, I’ve had retired people in the church, give me rides. And as a pastor, it gives me just another chance to get to know people, to spend time with them that otherwise I wouldn’t be spending.

David Hirsch: Yeah. That’s remarkable. Well, thank you for sharing that and being so forthcoming.

Um, my recollection was one of our prior conversations. You had mentioned that, uh, You were also diagnosed with some type of brain affliction.

Bob Bjerkaas: Oh yeah.

David Hirsch: I think it was glosso Pharaoh Legio yeah. Or something

Bob Bjerkaas: also pharyngeal neuralgia. And let me tell you something. That’s no good. I would rather be legally blind than have that loss.

No pharyngeal pain is terrible and I’ve had kidney stones. And let me tell you something, I’d rather have 10 kidney stones. Then, uh, have to deal with the kind of pain spikes you get. If your ninth cranial nerve is acting up, it’s just an incredible pain that runs down the side of your face, your jaw and your throat area, and you just want to die.

It’s a, it’s just horrific. And so I needed to have a surgery. In fact, it was just over a year ago. It was August 16th of last year that I had the surgery that was 2017. We’ve got a massive amount of stitches on the back of my head. But they had to go in kind of move the brain over and they were hoping just to move vertebral temporal artery.

So it didn’t push against the cranial nerve and cause that terrible pain, but they couldn’t do that because of my anatomy. So they ended up cutting parts of the ninth cranial nerve. So I, I have a lot of paralysis in my throat. Swallowing is challenging. I have my left vocal chord is paralyzed. So. This voice that I have is all on one vocal cord doing the work two.

So that’s been tough. And that recovery was really a humbling, a good experience. Cause I had to relearn how to talk, relearn how to move my tongue, relearn, how to swallow. It was just very humbling, but God is good. And I think I’ve made a, I just really thank him. I’m very, very grateful for the recovery that I have had.

David Hirsch: Well, that sounds like a remarkable last year experience. And to have you have the attitude and the positive outlook that you do is a testimony to God.

Bob Bjerkaas: Well, amen. And I hope that I don’t have another year like that ever again.

David Hirsch: Holy moly. Well, let’s switch gears a little bit. Um, uh, what was your connection to the special needs community before Christopher?

Your oldest was diagnosed with rolandic epilepsy.

Bob Bjerkaas: Well, I, one of the jobs I had when I was a college student, one summer, I worked with the Howard County parks and rec department, and I was one of the counselors for young adults with down

David Hirsch: syndrome. So you had some early on lessons, um, well, before you became a parent.

Bob Bjerkaas: Oh yeah.

David Hirsch: And well, before the situation with Christopher was diagnosed.

Bob Bjerkaas: Oh yes, that is absolutely true. So

David Hirsch: at what age was he diagnosed and what his rolandic epilepsy.

Bob Bjerkaas: Rolandic epilepsy is a kind of epilepsy that involves grand mal seizures and mini mall seizures. The grand mal seizures are the seizures where, you know, someone falls on the floor or they kind of go into that, uh, that seizure state where they’re completely unable to.

They’re just not aware. I don’t know all of the, uh, Right. Clinical terms to describe it. Many mall seizures are seizures where someone’s just completely zoned out for five, 10, 20 seconds. And then all of a sudden they’re back. So we experienced both of them as parents in the life of our oldest son when he was eight and rolandic epilepsy.

Cause epilepsy is kind of like autism. There’s think of it as a spectrum. There’s different kinds of epilepsy, rolandic, epilepsy. Which I understand is just named after someone named Roland, he has a very, very creative name, right? It’s a juvenile kind of epilepsy that is almost universally grown out of.

So if a parent is listening to this podcast and they have their kids been diagnosed with relented, epilepsy, Descartes, it’s temporary, stay the course for you. Dealing with this disability is a sprint, not a marathon. It might be two years. It might be 10, but there’s a light at the end of the tunnel.

There’s a, the brain in a sense grows out of this particular seizure prone condition, all of which does not mitigate. However, the fact that epilepsy is frightening. And when you are a dad or a mom and you see your child having a grand mal seizure, that can be, uh, one of the most desperate feelings you have.

Cause there’s literally not a single thing you can do.

David Hirsch: So he was in, was it second grade at the time? And what impact did that have on him socially or educationally?

Bob Bjerkaas: One of the things for people that have kids that have conditions like that, just be very, very careful about the physicians who treat your child and always remember that you are the parents.

They are not, they may be a good doctor. They may be a sketchy doctor. They may be somewhere in between. Uh, ultimately the responsibility to arrange for your child’s treatment lies with you. I have a very high view of science. You know, my father was a PhD in physics. I have a very high view of medicine, but I also have a very high view of being moderate and trying to find treatments that are as least invasive.

Not simply physically like a surgery, but mentally or emotionally, when my son first saw a pediatric neurologist, he was put on so many medicines that it was like he was a zombie. He was just in a fog all the time. Couldn’t concentrate, couldn’t focus, really couldn’t do anything. And Carrie and I just thank the Lord that we, we met at another pediatric neurologist, uh, worked out of Santa Barbara.

Who took a minimal approach and said, okay, I am going to try to find a way to medicate your child. Not so that there’s no abnormal brain activity, but I’m going to find a way to medicate your child so that he doesn’t have a grand mal seizure because the brain activity, you know, it’s very arbitrary to say, what is normal and what is abnormal, right?

Your brains are different. They’re like an Oregon. And that approach paid huge dividends for my son and for my family. And just be aware that there are different philosophies for how a doctor might treat a condition like that and be informed as a parent of someone that has either a temporary or permanent disability or condition like that, figure out what the options are.

And you, I would say to parents, you make the decision and if you’ve got a physician, who’s not going to go down that route, find a different physician. There’s lots of them.

David Hirsch: Got it. So getting a second opinion, taking a different path than the first path that you were on. Made a huge difference. That’s what I heard you saying

too. I remember you telling me that he had to repeat second grade as a result of all this.

Bob Bjerkaas: We had also moved twice. We’d moved from Vermont to Maryland temporarily because I was anticipating getting a job in Maryland that fell through. Then we moved to California. So there were a lot of reasons for that, but that that’s always a challenge for it.

And you just, as a parent, you just have to be patient. You have to stay the course. You have to love your kids through all of the difficult, uh, especially when they’re children. You know, I imagine when they’re adults it’s the same, but especially when they’re kids, they don’t necessarily understand everything that’s going on around him.

David Hirsch: So was he also diagnosed with Tourette’s syndrome?

Bob Bjerkaas: Yes. That we saw manifesting as early as kindergarten again, uh, we think of Tourette’s and we think of, um, and people that randomly say curse words, and that’s just one manifestation of Tourette’s others involved just. Motor tics, extremely rapid eye movements, compulsive making of sounds with the tone or motions with the hand.

And that’s the type that, uh, we’ve had experienced with in our family.

David Hirsch: So what was the solution or what, what did you need to do as parents in that situation?

Bob Bjerkaas: Well, we, we would bring it up with his primary care physician. We were assured by the primary care physician, both our wonderful doctor in Vermont and the doctors we would see out here that, you know, it’s not dangerous.

It’s not, it’s not something to be overly concerned with, be aware of it. You know, whenever you have a child that has ticks whatever the cause, whether it’s Tourette’s or something else, cause there’s a number of physiological conditions. It can cause somebody to have involuntary twitching of muscles, there can be a certain social stigma attached to it.

But my wife and I decided that we were simply going to not let it become a big deal and be very, very patient with, uh, you know, our son as he, he would develop a tick and it would kind of own his life for a couple of days or a week or two. And then he’d learned how to master that tick and keep it in check if you will.

But we never, well I’ll let me say this. We always tried very hard not to make. It a big deal because if you make it a big deal, here’s a poor kid trying to do everything they can to not do something that their body’s in voluntarily doing. And if you make it a big deal, you’re just giving them another big rock to carry.

And when we have every kid has some disability, that’s a fact I believe, and don’t give your kids extra rocks to carry, help them carry the ones they have. And, uh, if something’s not a big deal and your doctor told you, it’s not a big deal, don’t let it be a big deal. Just accept it, support your kid through it and let it work itself out as your, as your child grows.

But when parents panic trouble can ensue.

David Hirsch: Yeah. We’ll say to advise, uh, not to draw attention to something unnecessarily and then to be patient.

Bob Bjerkaas: Oh, absolutely. Absolutely. And sympathize. I think sometimes the power of sympathy is a beautiful thing. If somebody, whether it’s your kid or, uh, a parent who’s dealing with someone with disability in their family, if they ever are just frustrated and brokenhearted and tired and scared, sometimes the right solution is not to try to fix it or even to offer advice.

But just to weep with them that weep, just give them a shoulder to cry on and tell them you’re hurting about it too. And, you know, sympathy and compassion go a long, long way and giving someone the courage to struggle or to fight or to be a winner

David Hirsch: tomorrow. Yeah. Well, thanks for sharing. I’m sort of curious to know what were some of the more important decisions that you and Carrie made raising four children and with your oldest, Christopher, who was having some of these challenges, because that household must’ve been pretty chaotic.

Bob Bjerkaas: Yeah, it was. We’ve always tried to be. Fair, you know, my father, his term for it was you have to have a pension for fairness, heard that phrase a thousand times and not offer special treatment to any one kid. And, you know, the reality is all of our kids are gonna go through different things at different times.

And you want to try to be sure that you are loving your kids and investing in your kids as evenly as possible. So that your kids that are going through something at a particular time, don’t think, Oh dad, mom, if I were going through something, they pay me more attention. Well then they’re going to find something to go through as you don’t want that.

So just always be very intentional and spending time, quality time with each of your kids, as much as you can.

David Hirsch: Advice.

Bob Bjerkaas: I was going to say that, you know, every, every family is in a different place in terms of whether, uh, both parents have to work, whether one can stay home with their hours are, but whatever time you have and can make available, try to invest it in your kids’ lives is as intentionally and as evenly as you can.

Well,

David Hirsch: one of the things that comes to mind when you talk about the word fair, And, you know, when you’re growing up, what you’re looking for is to get equal time with your parents and your siblings, or you’re sort of in competition with your siblings for equal time and equal is a really hard thing to accomplish.

But, uh, I think of it as being equitable, which is to try to do this balancing act when you got four children like you and Carrie have, or Peggy, and I have five children, it’s. It’s crazy right. On a day to day basis, then it’s not just on, you know, what’s happened today, but looking at things in weeks and months and longer periods of time when there’s different challenges that are going on in your family.

Bob Bjerkaas: Yeah. Yeah. I agree, David, and I think that, you know, somebody once said that there’s nothing more than just an absolute equity and if you had he’s that out and think about it, I think there’s some wisdom there. I think you also have to take a big picture. You can obviously be very. Kind of pitifully trivial.

If you look at, okay, I have an hour, I’ve got five kids. I’m going to spend, you know, divide narrow by five that’s. What is that? About 12 minutes per kid. Okay. Your time is done. You know, that’s just ridiculous. Find a way to make it clear that that’s where your heart is. And that’s what your goal is. Kind of like you’re a parent of four or five, three, maybe seven kids, however many you have.

And you’ve got $300 in your Christmas budget, or you’ve got $120 in your Christmas budget. You’re going to try to find, use your word, equitable guest role. And you’re not going to spend 50 on one kid and $10 each on the others, but also you’re not going to spend to the exact same penny on each. You know, the principle of trying to come up with a, a ballpark.

What is fair and will be perceived as fair. Yeah, there’s more grace and heart involved in that and just cold science and counting seconds and minutes and pennies and pollers.

David Hirsch: Absolutely. So did the Christopher situation have an impact either positive or negative on your other kids when they were young?

Bob Bjerkaas: Well, that’s a good question. You know, I’d like to think yes, positive, but to tell you the truth, I, I’ve never asked. I’ve never thought to ask them that. So I don’t know, but I tell you what I think I’m going to ask them.

David Hirsch: Well, uh, just to put it in perspective, he was diagnosed with Tourette’s at say age four and then subsequently with epilepsy at age eight one, would those things have sort of been behind them or you’re looking at them in the rear view mirror.

Bob Bjerkaas: Probably by the time he was in eighth, ninth grade, he was given a clean bill of health with respect to epilepsy. So

David Hirsch: by the time he was in high school then

Bob Bjerkaas: Oh yeah. Okay. Yeah, that was the thing that passed the Tourette’s. I don’t know if he’s still has chicks, but he has just learned how to master his own body in ways that they don’t manifest.

Again, that’s something that I very deliberately chose not to make a big deal of, but to just say, Hey, this is how my son’s body was made and his, uh, neuropathways operate. And I love them nonetheless, and completely accepted. But I remember when the kids were really small, they used to think it was really cool that their big brother could move his eyes really, really, really quickly.

So that was like a party trick.

David Hirsch: I remember you sharing this really fascinating story about, uh, building a pirate ship and it was not your typical situation, but it was very detailed and it was over a much longer period of time. Recall that story for me

Bob Bjerkaas: when my son, cause you know, if you have a child that’s diagnosed with something and they know something’s not right, they’re scared.

You know, they have a seizure, they wake up in an ER bed with. Needles and wires and hoses going into them and they’re frightened and they think, Oh, life isn’t going to be the same. They maybe they need to repeat a grade. They feel like they can’t do anything they’re broken. They’re no good. I took a really, really long walk with my son when he was in second grade.

And he was just, as they say in Vermont, trying to put some air back in his car, I said, Christopher, what do you want to do? What’s one thing you want to do that? Just to think big. And at the time, you know, he was a very normal boy and was into alligators and pirates and things of that. He wanted to build a pirate ship.

We’re going to build a pirate ship. I invited him to use his imagination to think of the perfect pirate ship he would want to build. And I don’t know if you’re familiar with the toys called Playmobile with little people that are about three inches tall and Playmobile makes some pirate shifts, but none of them are quite right or good enough or big enough, or have enough cannons.

So we designed a, a pirate ship. We researched it. We ended up picking a pirate ship that was based off of a 1588 English galleon, which would have been the kind of pirate ship used by, you know, early 17th century pirates in the Caribbean. And we built it out of wood, not balsa wood, but real wood. We learned how to steam and bend.

We. Oh, goodness, that pirate ship probably has 300 pieces of wood in it each and cut exactly right. Curved. Exactly right. Scaled for pirates that were his Playmobile pirate size. Uh, we learned how they alternated his fascinating things. You can learn with your kids when you do these kinds of projects for them.

When they built ships in the 15 and 16 hundreds, they would alternate, uh, to, to Fasten the planks to the, uh, ribs. The ribs are like the Joyce of the floor of the planks are like your floor on your house, passing those on. They would alternate with rows of wooden pegs and iron nails, because over time, Hey, when they first Fasten the planks on the nails would be the more effective fastener.

But over time, the nails would rot and fall out. At the beginning there wouldn’t pegs would be the inferior fastener, but over time as they swelled, they would be the more significant, faster. So if you look at their model ship, we built on all of the wooden ribs we built and all the planks, we fastened the rows, alternate between little tiny Brads and little tiny dowels.

We learned how to tie the knots. Exactly like the pirates tie, the knots for the rigging. And it was just a wonderful experience. It took us a little over a year of Saturday daddy and Christopher time, but we built an heirloom. And we built a memory. And I like to think that I taught my son that look, I don’t care what challenges you have.

You can do whatever you want. You got attention problems and your daddy’s legally blind. But look at what we did with power tools. What we did with disc standards, look at what we did with, uh, threading, uh, uh, strings through little needles. And, uh, and we built something beautiful.

David Hirsch: It sounds like it was not only therapeutic, but it was a lot of

Bob Bjerkaas: great fun.

David Hirsch: And, uh, here, the rest of us dads are helping our kids with their Pinewood Derby cars.

Bob Bjerkaas: Well, you know, I’ve never got to do that. None of my kids did boy Scouts, so I feel good about that.

David Hirsch: So I’m wondering, where is this heirloom? Where is this pirate ship today?

Bob Bjerkaas: Now? It is on, uh, we have, uh, a Bureau, uh, a tall kind of dresser drawer thing in our living room.

It has puzzles and games and stuff in the different doors and sitting right on top of it is this. Is large, a four foot long pirate ship festooned with Canon and Playmobile pirates.

David Hirsch: When I come and visit, I want to,

Bob Bjerkaas: you I’ll let you play with it, man. I’ll let you pick which pirate you want to be. We can have a battle.

David Hirsch: I’m going to hold you to that

Bob Bjerkaas: center, right? No,

we kidnapping ravage and don’t get off your home.

David Hirsch: So, uh, thank you for sharing and being so candid about not only your own challenges that you’ve experienced, but, uh, some of the challenges that you and Carrie were able to help Christopher navigate. I remember you telling me that, uh, as a professional now, and more recently, you’ve had the opportunity to speak at disability conferences.

Uh, what’s drawing you to do that. What type of involvement have you had?

Bob Bjerkaas: Well, I think the opportunities have presented themselves mostly because I, I have a disability and I’ve learned a lot of things about life with a disability. You know, I have the handicap parking placard to prove my qualification, but, uh, I also think that a lot of churches.

Struggle with how do we relate to, and how do we involve and how do we serve people with special needs? You know, as your organization, David is a, is kind of Testament to this fact. There’s a, a large movement now and it’s been going on. I think Johnny and friends is really one of the real front runners in this whole thing.

And this is, uh, a theme that they have been very faithfully proclaiming for goodness, at least 30 years, maybe 40 now. But bottom line, there’s a great need there. And to have people speak into that, especially in Christian contexts, from a biblical perspective on disability, that doesn’t see disability as a punishment from God, but rather sees it as part of his.

A unique crafting of each one of our lives in the narrative of each one of our lives. It’s part of the storyline. It’s part of the plot development, part of the beauty and what makes me Bob and you David, and, and other people, whoever they are and learning how to embrace those things. And, you know, as Christians, we often forget that God delights to use us in our weakness and not in our strength, in our weakness.

That’s the theme of the Bible. And one of them in any event and, uh, helping Christians to see that and to actually celebrate some of your challenges instead of trying to hide them is something that’s been very, very near and dear to my heart.

David Hirsch: Thank you. So there’s a favorite author of mine. I’ve never met him.

Um, but he’s one of those very few people that if I didn’t have to go way out of my way, I think I’d really enjoy meeting him. And I don’t know if you’re familiar with him, but his name is Jim Stovall. He’s a businessman entrepreneur author. And I remember the title of one of his books is you don’t have to be blind to see.

Bob Bjerkaas: I’ve never even heard of that book. I’ve heard of the name, Jim Stovall, but that sounds like a fascinating title.

David Hirsch: Yeah, well, I’m gonna dust it off.

Bob Bjerkaas: He’s referring. I’m sure. To a verse in second Corinthians that says we live by faith, not by sight.

David Hirsch: Well, he’s actually bind. I don’t know if he’s just legally blind, but I think he lost all of his sight.

He had a sight as a young person and then ended up losing a site. So he’s totally blind. And that disability, what we think of as a disability. His lack of sight has not precluded him from living the life that he wants to live

Bob Bjerkaas: and

David Hirsch: what a great testimony, which is what you’ve been sharing with us, which is, Hey, I’ve had to deal with this since I’ve been 17 more substantially since I’ve been 29 or the last, you know, 21 years of your life.

And, you know, people who are close to, you know, and understand, but you know, people from a distance might not, you know, if they see a coaching lacrosse game, It’s not like you’re there with a cane and the seeing eye dog. So it’s a, it’s just remarkable how far we’ve come, but how much farther we need to go for that matter.

Bob Bjerkaas: Yeah, that’s true. That’s true.

David Hirsch: So, um, maybe from your pastor experience, not so much from being a dad, but, uh, what are some of the more important takeaways that come to mind? Uh, one thing about raising a child with a disability or difference.

Bob Bjerkaas: I would say that number one, just raise your child. One of my pet peeves would be a fair expression, but a lot of times when I see disability ministries for people with disabilities in ministry, it’s almost like we pigeonhole people with disabilities or people that administer to people with disabilities into their own almost quarantined corner.

Like rather than. To follow the old model of a public education, certainly by the eighties of mainstreaming, rather than finding ways to bring our disabled folk into all of our regular ministries. We want to create something separate but equal sometimes. And I think that’s a mistake and I see that mistake in the way.

Some people, parents, they parents they’re one kid different. And the bottom line is, are kids that have special needs. Don’t need parents to parent them through the lens of that special need. They need parents, your, your friends at church or in your neighborhood that have a disability. They don’t want someone.

Who’s all they want is a friend, just like all your kids want as a parent, you know, and they don’t want my sense as someone with a disability and as having been related to people with disabilities. And pastoring people with disabilities I’ve even coached some kids with disabilities. They don’t want their disability to define their relationship.

Whether it’s with you as a dad or a mom, or with you as a brother or sister, or with you as a colleague or with you as a teammate or with you as a church member, they just want to be who they are and who they are happens to involve a disability. So I would encourage parents. Hey, just be your kid’s parents.

They’re just a kid and you are a parent and as much as possible strive for normalcy, accept them as who they are. And don’t always let the disability define the activities, the discussion, and, you know, let it be peripheral and it will be peripheral. Uh, if you make it to focus that disability is going to define your kid’s entire life.

And that’s what we don’t want to see happen.

David Hirsch: Yeah. That’s fabulous. Probably easier to

Bob Bjerkaas: talk about the Mexico. Everything is, everything’s easier to talk about the execute, David. I’m a perfect quarterback don’t ever let me actually put off.

David Hirsch: Yeah. That’s like the Monday morning quarterback syndrome. Right.

Everybody knows what they could have should have done right the day before.

Bob Bjerkaas: That’s exactly right. So

David Hirsch: what advice can you share with dads or parents for that matter about helping a child with disabilities reach their full potential. You’ve mentioned one, you know, raise your child strive for normalcy. Is there something in particular that comes to mind?

Bob Bjerkaas: You know, in Philippians chapter four, we read it. If anything. Noble. If it’s excellent. If it’s praiseworthy, if it’s beautiful, as a good think about such things, you know, trying to help people. You know, I, as a pastor, I have mentored people that have paranoid schizophrenia, people who are bipolar, people who have had pounds, and oftentimes it is difficult for people who struggle with those kinds of things to see past their disability.

And one of the greatest gifts we can give people is to help them to see past or through their disability, to the things they can accomplish in spite of, and sometimes even the cause of, or through that disability and help them to see capture some vision of something beautiful or noble or praiseworthy or excellent or good that they can do, whether it’s an eight year old boy building a pirate ship.

Or whether it’s a 30 year old writing a journal or, um, serving meals or whatever, it might be, help them see that, and then be a part of any support or team they need to help them do that. Help them find reasons to believe that there are things they can do, that they are in fact able. Not disabled and when they can see how they are able to do certain things only then will they have a chance to really blossom and flourish where there’ve been planted?

David Hirsch: No, that’s fabulous. Thank you. So why is it that you’ve agreed to be a mentor father as part of the special fathers network?

Bob Bjerkaas: Well, Hey, one of the things about the way I’ve chosen to live my life is if I can help someone, I want to help them. I know that when I was struggling with my glossopharyngeal neuralgia, I started blogging about it.

And my whole hope was that if even one person with glossopharyngeal neuralgia, if only one person is able to be encouraged to deal with this pain for another year, or to be emboldened, to get the surgery or a fight through the difficult recovery, it’s worth me bearing my soul as it were in sharing my difficult and funny experiences.

Uh, having a bear, but in the recovery room and all the rest, and, you know, David one person reached out to me via my blog and said, I was diagnosed with fibromyalgia. Thank you so much for sharing. It has been such an encouragement to me and that makes the whole thing worth. It. It doesn’t take much and they are suffering worth a lot.

And for me, that doesn’t take much as can I help even one person, uh, find a way to survive or better yet thrive. And what is honestly a difficult situation. So, um, if, if some parent dealing with an issue related to eyesight or kids dealing with tough issues, physically, or mentally or emotionally, they handle, I can help.

Why? Well, I want to help.

David Hirsch: Thank you. So let’s give a special shout out to our friends at Johnny and friends for putting us in contact with one another.

Bob Bjerkaas: Amen. Good people.

David Hirsch: Great people. Is there anything else you’d like to share before we wrap up?

Bob Bjerkaas: I would just say that, uh, I have found that no matter what I’m dealing with in my life, God is faithful.

And I’m so thankful that, uh, I know that as Philippians chapter four, I know I referred to that earlier today in Christ. I can do all things and, um, I have not let my disability and I haven’t let my kids disability. I don’t let my parishioners disabilities stop them from thinking big, huge grand thoughts about what can happen in their life, what they can accomplish in their life and what God can do in and through them.

That’s just the, the gospels about that too. And we need to preach it loud and clear.

David Hirsch: Amen. So if somebody wants to get information on epilepsy, Tourette syndrome, blindness. How would they go about doing that? How would they go about contacting you

Bob Bjerkaas: for that matter? Well, if they want to contact me, they can contact me on my, my blog is at www.bobbjerkaas.com and Bob is spelled B O B. And my last name is interesting. B as in boy and J E R K. That’s the word jerk. And then A A S. And, uh, I know often people want to put a S S and I tell them, Hey, it’s bad enough German, last name. Don’t go putting that word in there too. And there you’ll find, I do blog about disability. I have links to Johnny and friends in some interviews I’ve done on the radio with Johnny and friends on disability.

Specific information about the Rex about epilepsy, Val legal blindness, uh, I don’t know of specific sites to direct people to, but, um, I know there’s a tremendous wealth of information on the internet in the first place. I’d go. If I had a disability is Dani and friends. Uh, they have tremendous access to resources there.

And then barring that I do Google search. Uh, but again, I would, I would reach out to my local pastor and say, Hey, what can you have to offer to help here or there in this area? Because just regular human beings who care are a tremendous resource. I think we under utilize great

David Hirsch: advice. Thank you. So, Bob, thank you for your time.

In many insights as reminder, Bob is just one of the dads who created 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, your own, please go to 21stcenturydads.org.

Thanks again.

Bob Bjerkaas: You’re very welcome. Thank you, David.

Tom Couch: The Special Father’s 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.

Sometimes the mentor father is just there to answer a few questions. Sometimes they become good friends. It’s a proven support system for new fathers with special needs kids. If you’re a father looking for support, or if you’re a dad who’d like to offer support, go to 21stcenturydads.org. That’s 21stcenturydads.org.

David Hirsch: And thank you for listening to this Special Fathers Network podcast. Stories of fathers helping fathers.

Tom Couch: The Special Fathers Network podcast was produced for 21st Century Dads by Couch Audio, and again, to find out more about the Special Fathers Network, go to 21stcenturydads.org, 21stcenturydads.org.