405 – JP Klop of Alberta, Canada, A Draftsman & Father Of Two Including One With Schwachman Diamond Syndrome

Transcript:

This week’s Dad to Dad Podcast features a father with a rare condition

J.P. Klop: I would say don’t be afraid to ask for help. I know that often, and I think this is especially true for dads, you want to try to solve everything yourself, but when you’re dealing with something like this, it’s often, well, one something that’s not solvable because you can’t, you know, change what’s going on in your child’s body. But also having people around you is really important.

David Hirsch: That’s our guest this week, J.P. Klop of Ontario, Canada, a draftsman with JPR Industries and a father of two children, including his son Isaac, 2, who has Schwachman Diamond Syndrome, a rare condition that affects many parts of the body, including the bone marrow and pancreas. We’ll learn about that and Hear more about JP’s story on this Special Fathers Network Dad to Dad Podcast.

David Hirsch: Dad to the dad, you’re not on your own. We walk this road together, heart and whole.

Tom Couch: Now say hello to the founder of the Special Fathers Network and host of the Dad to Dad Podcast, David Hirsch.

The Special Fathers Network Mastermind Group is free for the first 30 days

David Hirsch: Hi, I’m David Hirsch, host of the Special Fathers Network Dad to Dad Podcast. The Special Fathers Network Mastermind Group experience is the most comprehensive program the 21st Century Dads foundation offers dads raising children with special needs, meet virtually on a weekly basis and form meaningful relationships while sharing weekly wins, discussing books, and sharing heartfelt challenges. The Mastermind Group is free for the first 30 days. Stop trying to figure out things on your own. I invite you to join one of the existing Special Fathers Network Mastermind groups. You’ll meet some extraordinary dads, exchange a lot of best practices, and recharge your fatherhood battery for the journey ahead. It might just transform your life like it’s done for so many others. For more information, please see the show notes or Simply go to 21st centurydads.org.

David Hirsch: Through every season, in every stride, great dads are present to force 7,000, 365.

David Hirsch: Now let’s listen into this conversation between JP Klopp and David Hirsch.

John Peter Klopp is a draftsman and father of two young children

David Hirsch: I’m thrilled to be talking today with John Peter Klopp of Alberta, Canada, who’s a draftsman with JPR Industries and a father of two young children, including a son with Schwachman diamond syndrome. JP thank you for taking the time to do a podcast interview for the Special Fathers Network.

J.P. Klop: Thank you.

David Hirsch: You and your wife Leanne have been married for three years and are the proud parents of two young children, Anna, 1 and Isaac, 2, who has Schwachman Diamond Syndrome, which is characterized by the inability to digest food due to missing digestive Enzymes, low muscle tone, anemia, skeletal findings and intellectual disability. Let’s start with some background. Where did you grow up? Tell me something about your biological family.

J.P. Klop: So I was born in Ontario, Canada, actually London, Ontario to be specific. But my parents immigrated from the Netherlands, both before I was born. So they’re both first generation, I guess, within Canada, or I would be first generation born in Canada.

J.P. Klop: So that’s I guess the context.

J.P. Klop: Kind of just small town, not big city. My dad for most of my childhood worked for a, a cement plant, as it and plant manager. Somewhere through my school years he switched to start his own business and do IT consulting. So that’s what he does now. I went to a private school for all of elementary, Christian private school. And I actually got bullied quite a bit through elementary school. Part of that is likely due to the fact that while I’ve never been formally diagnosed, I would likely fall under the high functioning autism side of the autism spectrum. So, you know, I grew up in a farming community. I was not a farmer. I didn’t really fit in. I was too intellectual.

J.P. Klop: And you know, all the other guys.

J.P. Klop: My age were farm kids who wanted to wrestle and do things that I wasn’t interested in doing. So I was kind of out of.

J.P. Klop: Sync with the kids.

J.P. Klop: And so, yeah, at the end of grade six my parents pulled, me out of school, started homeschooling me and I also have a sister so they.

J.P. Klop: Homeschooled both of us. It wasn’t that difficult of a, ah.

J.P. Klop: Transition for my parents. My mom’s a teacher by training, so.

J.P. Klop: I would say that my childhood for.

J.P. Klop: The most part was fairly difficult, mainly because of the bullying. in grade eight actually I was diagnosed with ptsd. I spent a couple years in college and did a advanced diploma, I think you guys would call it like an associate’s degree in mechanical engineering technology. And that’s still the field that I’m working in today.

David Hirsch: Yeah, well, thanks for the flyby. Really appreciated that diagnosis, or self diagnosis as being on the autism spectrum might be a completely different, podcast interview.

How would you characterize your relationship with your dad

And I’m sort of curious now going back a little bit, how would you characterize or describe your relationship with your dad?

J.P. Klop: My relationship

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J.P. Klop: with my dad would be pretty good. Me being a bit artistic. I think, you know, it has its challenges for parents and you know, sometimes relating to, you know, the way my mind works and whatnot. I don’t think was always the easiest. But we have a good relationship. We, I mean they come visit here every so often. And because of Isaac’s condition, we’ve struggled to visit them. Flying with a feeding tube and all.

J.P. Klop: Of that’s been complicated.

J.P. Klop: We haven’t attempted it yet, but we’re told it’s not so straightforward. So I talk with him on an ongoing basis.

David Hirsch: That’s great. So, I’m wondering if there’s any important takeaways that come to mind when you think about the relationship, with your dad. Lessons learned, perhaps?

J.P. Klop: I definitely take after my dad in some ways. He’s always worked fairly long hours and my tendency is to do the same thing. He was also always there for us, like, you know, if, if we needed something, he would make time. And I strive to do the same for my family.

I’m wondering what influence your grandfathers had on you when you were growing up

David Hirsch: I’m thinking about other influencers, and I’m wondering what, if any, influence your grandfathers had on you when you were growing up, or as a young adult for that matter.

J.P. Klop: So my, one grandfather passed away when I was really young, so I don’t really have a lot of memories of him. My other grandfather, however, was also a teacher because we homeschooled for all of middle school and high school. He would come twice a year for.

J.P. Klop: Five weeks from the Netherlands and he would very gladly teach us because he loved languages.

J.P. Klop: So he would teach us English and French. And my sister took an interest in Spanish, so he would give us Spanish lessons as well. We saw him quite a bit. He’s unfortunately not with us anymore.

J.P. Klop: But him and my grandmother, yeah, they.

J.P. Klop: Were a large presence in our ah, life.

JPR Industries designs feed mills and grain elevators to service Canadian feed industry

David Hirsch: I think you mentioned that you took an advanced diploma in mechanical engineering and that was from Conestoga University. And you’ve actually pursued that as a career. And I’m wondering what it is that you do at JPR Industries as a draftsman.

J.P. Klop: So my primary role there would be looking after the design of all their equipment. So as a business, like the.

J.P. Klop: Area of Alberta we’re in, is.

J.P. Klop: Considered the feedlot capital of Canada.

J.P. Klop: So the, the town that I.

J.P. Klop: Live in, if you were to draw like a 30 mile circle around us, we have about two and a half million beef cows, or about 60% of Canada’s beef cattle.

J.P. Klop: So that’s, that’s the industry we service.

J.P. Klop: It’s the largest industry in this area of the country. So what we do as a business is we design feed mills and grain elevators to service this industry. And you can think of your feed mill kind of as the kitchen to the farm.

J.P. Klop: Right. It makes all the food for these Cows.

J.P. Klop: So we do the design right from the structural to all the equipment that conveys the grain around to process it. So the part that I would be.

J.P. Klop: Involved in is, yeah, the design of.

J.P. Klop: All the grain conveying equipment. So drag conveyors, bucket elevators, augers, grain cleaners, you name it, we probably do it.

Liam and Leanne met during an internship at a human rights organization

David Hirsch: So I’m sort of curious to know, how did you and Liam meet?

J.P. Klop: We both did an internship with a human rights organization. Yeah, the, the organization primarily focused on talking around reproductive rights and that was how we met. And we had a rule during the internship that we were not allowed to date fellow interns. So towards the end of the internship I was very interested in getting to know Leanne further. So I, I went and asked the leadership team m like, hey, you know, do you mind if I ask Leanne out? So that they had a meeting about us and approved that I could ask her out a week before the internship ended and we continue to see each other. so then in, I guess it would have been January of 2022, one of us had to make a decision about which was going to move. Either Leanne moves to Ontario or I moved to Alberta. So we made the decision that I would move. So I moved. And within two weeks of being in Alberta, I found the job at jpr, where I’m still at. And four months later we got married and started our family just under a year later, so.

David Hirsch: And the rest is history.

J.P. Klop: Yeah.

Prior to having children, did either of you have any connections to special needs

David Hirsch: Let’s talk about special deeds. Prior to having children, did you or Leanne have any connections to the world of disability or special needs?

J.P. Klop: Leanne has. She’s volunteered with, a group in the church before we met that dealt with people that had special needs within the church. So she had some exposure in that sense. And like I mentioned that, I’ve never formally gotten tested for autism, but autism is actually quite common in my family. I have several cousins that need full time care because their autism is

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J.P. Klop: quite severe. And then I have quite a few cousins that would be similar to me would fall in the high functioning side, you know, can function relatively well in day to day society with some challenges. Right. So, in that sense I kind of grew up around special needs and it doesn’t really phase me because at least autism doesn’t because it’s, it’s so common in my side of the family. So. Yeah, that. And actually I should mention my mother also leads a group, in Ontario for people with special needs within the church that they’re part of. So I grew up attending that group too. Just because my mother ran it and my sister, I think, is still involved to this day.

Isaac was diagnosed with Schwachman Diamond Syndrome when he was young

David Hirsch: So I’m sort of curious now. What is Isaac’s diagnosis and how did it come about?

J.P. Klop: So Isaac was diagnosed with Schwachman Diamond Syndrome. This is at its root, from what we understand, a, bone marrow disorder. However, it affects most, if not all the body systems in one way or another. Not necessarily all noticeable at any point in time. So that the way we noticed it with Isaac was actually, when we were expecting our daughter Anna. So Isaac was born on the smaller side, and, that was never really seen as a concern. Early on he was struggling a bit to gain weight, but they were more just monitoring it. And then, when we became pregnant with Anna, then my wife’s milk supply dropped and Isaac refused to drink a bottle. So he ended up in the hospital, dehydrated because he was stubborn and didn’t want to consume anything but mother’s milk. A bit of a problem when mother no longer has milk. So, first I just thought, you know, okay, you know, this is a food aversion and he just needs some help trying to, to eat food. one of the things he also noticed while he was in the hospital was that he had high liver enzymes. But they kind of said, well, you know, that’s not uncommon if you’ve been dehydrated. We’ll just look at it again in a few months. And we would expect him to be down, but if they’re not, then we’ll do a bit more digging. A few months went by, and so he went on a feeding tube in the hospital to allow us to feed him while we dealt with what we thought was a food aversion. Yeah, a few months went by, they ran his numbers again, and still high liver enzymes. So then they decided to refer us to the Children’s Hospital in Calgary to a GI specialist. Let’s see what we can find out about this. We don’t really think it’s concerning, but we just want to double check. Right. So they, you know, they ran a whole bunch of standard tests. they actually tested for Schwachman Diamond Syndrome. There’s a standard genetic test they can run, but it came back negative for Schwachman Diamond Syndrome. So they kind of ruled that out. And then they were looking at a few other things, but nothing really fit. So after several months of going through that, probably about half a year, we got referred to genetics to just do a full genetic panel and see what we could find out. And that’s when Genetics came back with that. Ah, it was Schwachman diamond syndrome. Now, the reason why the original test came back negative is there are several known mutations for Schwachman diamond syndrome. And the one the test goes for is the most common, which counts, from my understanding, about 90% of cases. And he doesn’t have that, mutation. He has the second most common mutation, which that test does not screen for. But they’re pretty confident that they can put this label on it. It’s just, you know, we can’t be 100% confident. And maybe down the road there’s, you know, more, more people with this mutation that they don’t know about. Now, thankfully, right now the biggest issue he has is the, pancreatic indeficiency. And because of that, he, he’s still on a feeding tube. Actually, he. Two weeks ago, he had surgery to go from an NG tube to a G tub. So we’re currently dealing with all the learning and adjusting that comes along with that. the G tube is something he could have indefinitely, whereas the NG goes through the nose and is more meant for, like, a short time. But what it means for us in the long term is that because it’s at, its core bone marrow disorder, he’s likely going to start exhibiting, like, more symptoms as he gets older. And depending on how quickly his bone marrow deteriorates will kind of define, you know, when in his life he’s gonna start dealing with more of this stuff. but it’s from our understanding, it’s more of a when than it is an if.

David Hirsch: We’ll be back with more of the conversation on the special Fathers

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David Hirsch: 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.

Our son got tested recently and may have skeletal issues as he gets older

Now, back to the conversation.

J.P. Klop: Our daughter got tested recently as well. We’re supposed to get her results for that actually next week. So even if she doesn’t exhibit symptoms, which she doesn’t, it is still possible that we find out that she has it. She just isn’t as far along as he is. And, yeah, we’re still learning a lot. we’re currently waiting for more referrals. So a lot of children who have this also sometimes have skeletal issues throughout development. so he might need an orthopedic surgeon to correct some of these as he gets older. Learning and behavioral issues are things that appear to be part of this as well. Although from our understanding, they don’t show up closer till, like, high schoolish. So it’s right now he doesn’t have a lot. He’s just a happy young boy who’s small for his age. I mean, he’s never made it onto the growth chart. I think he’s at, like, the third percentile, but it doesn’t really affect him. Right. He’s just a happy boy running around living his life, doing what every other child his age would be doing. And, yeah, actually, one of the things that we consider a huge blessing is because we’ve known about this from such a young age, he just thinks it’s all normal. Whereas, like, our daughter, we notice, you know, she’s not used to going to all these medical appointments and, you know, when they ask, hey, can we do some blood work on her just to double check that she doesn’t also have this. She, she gets all upset about it. Whereas, you know, you show up for blood work with him, he’s just like, oh, we’re here again. You know, he’s not exactly thrilled. But he also doesn’t throw, like, a giant tantrum and isn’t upset. Like, he just, you know, he’s upset for 30 seconds when they poke the needle in, and then he’s over it.

David Hirsch: Yeah. Well, that is a silver lining. Thanks for sharing.

Are there any treatments for STs or not? No. But a lot of the symptoms do have treatments

Are there any treatments for, STs or not?

J.P. Klop: No. So because it’s genetic, from our understanding, like, unless you could change the genes, there’d be no way to cause it to no longer be a thing. But a lot of the symptoms do have treatments to, like, minimize and correct them to. To an extent. So from our understanding, the. What they do from a medical point of view is just try to counteract the symptoms as best they can. And the biggest things that he would be at risk for is there’s quite a high chance of him having leukemia quite early on in his life and bone marrow failure. So, I mean, I want to be careful what I say here because we haven’t actually seen the doctor that will be doing this tracking. But I think they. They just. They monitor this for trends, and if it’s trending in the wrong direction, they try to respond before it turns into something like leukemia. I actually have some notes here from, like, one of the organizations we found hugely helpful is there’s an organization in the US Called the Schwachman Diamond Syndrome. Foundation, and they have quite a bit of information on their websites also for parents to, wrap their head around, you know, what this all means. And they post research studies and they also fund quite a bit of research related to this. And, one of the first things we did when we got the diagnosis was reach out to them. So, like, based on their information here, they say, like, the median survival age is 38.2 years. So younger than, you know, somebody without this. But it is something which, you know. Well, quite a few, from my understanding, don’t make it to adulthood. There are also people with, who have this, who you know, for at least part of their life, lead a relatively normal life and can do things that you would expect a normal child to do. And from, yeah, what we gather is that the largest cause of death would be like, leukemia and related to, like, bone marrow failure. So as long as the doctors can stay ahead of that, his life expectancy would be fairly decent, at least as we, as we understand it.

David Hirsch: Well, you’re at the beginning of your journey. Yeah, there’s a lot of, uncertainty. sometimes you benefit from doing all this research and having all this information, and other times you’re like, maybe we’d be better off not knowing. Right. you go down these rabbit holes.

Diamond, your child has a genetic disorder that could take his life very early

along those lines, is there been any meaningful advice you’ve gotten early on that’s helped you put things in perspective?

J.P. Klop: I think. I don’t know about advice, but there were a few things which we realized

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J.P. Klop: realized quite early on. just like my wife and I discussing talking about this. I mean, yes, our child has a genetic disorder which could take his life very early, but none of our children’s lives are guaranteed. You see, you know, children killed unexpectedly in car accidents or that have some medical episode for something that, you know, people were never aware of. So in, in a sense, it just reminds us of the mortality of our children. Right. And the importance of treasuring them, in every moment we have with them. We also, like I, I’ve mentioned that we’re part of a church. the church community has also been very helpful and also just putting into perspective. And obviously faith would influence how you look at these things as well. I mean, I wouldn’t look at it as something outside of God’s control. God is still in control of when our children will live and when they will pass away. And I can also just leave it with God and not, you know, dwell on, you know, what’s tomorrow going to look like, what’s the day after that. To look at like, right, we, we trust in God to take care of our needs today and he’ll take care of tomorrow. And if tomorrow means that, you know, he has some medical issues that crop up and you know, it starts going downhill, he’ll also provide the strength to deal with these things.

David Hirsch: Yeah. Well, thanks for sharing. I’ve heard it expressed before. One conversation comes to mind. It was with a rabbi out in Los Angeles, Bradley Arts, and who’s like a dean of the rabbinical college. So like a, ah, rabbi of rabbis if you will. And he has twins, one with autism. Their twins are in their 20s, maybe 30 now. their son is non verbal, brilliant but non verbal. And he reflected on his own spirituality and he said he doesn’t know how parents who are not believers can deal with adversity in life, particularly you know, severe adversity, trying to do it on their own.

J.P. Klop: Right.

David Hirsch: Without a higher power or you know, God playing a role. So it’s I, think important that you reflected on that and you have that as your perspective which is, hey, you know, in day to day terms you’d say worry about what’s within your control. Right. And there’s certain things that are beyond your or our control.

J.P. Klop: Yeah.

David Hirsch: And if you spend any unnecessary time, you know, worrying about these things, you know, just not time well spent. Right. You’re burning brain cells and energy that you could have real allocated to just being present like you said, you know, with your kid, you know, he’s a happy kid. That’s what you said. Yeah. Right. He’s just doing all the things that typical kids that are two or three year old would do. Maybe he’s a little bit smaller but he doesn’t know any difference. That’s just his own situation. So hey, just embrace that.

J.P. Klop: Yeah.

J.P. Klop: My wife actually just passed me a note. she said the other thing that we have benefited from as well and would recommend is counseling. You know, it’s, you might feel like you’re doing okay and maybe you are in the moment, but it is also a very difficult thing. And sometimes when you deal with things like this, you know, these, these aren’t things that you’re necessarily prepared to deal with.

J.P. Klop: Right.

J.P. Klop: So then having an outside perspective that can help you process and think about these things. Like one of the things our counselor told us is, you know, one of the things that we’re facing is anticipatory grief because you, you know that hard times are coming and you know that things are going to go Downhill at some point. So to an extent you’re already grieving that today. But also it’s not healthy to spend all your time today grieving about something that is in a distant tomorrow. Right. We don’t know when that time is. So, yeah, as you said, like, enjoy the blessings of today and the good times that we’re enjoying today. And it’s good to know that these things are coming and live within that reality. But dwelling on them too much is not a healthy thing to do.

David Hirsch: Yeah, you articulated it very well. So, under the banner of what I think of as supporting organizations, I heard you make reference to the church and your, group of acquaintances or friends, the, Schwalm Diamond Syndrome foundation, with the resources that they have, and then the counseling, which are three like pillars I think that you can, rely on, and your own spirituality.

Don’t be afraid to ask for help when dealing with a medical diagnosis

So I’m thinking about advice now and I’m wondering. I know that you’re a relatively young dad, right. You’re closer to the beginning of your journey, as a father. But I’m wondering what advice comes to mind, to others that might find themselves in a similar situation with a relatively new diagnosis, with a lot of uncertainty.

J.P. Klop: I would say don’t

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J.P. Klop: be afraid to ask for help. I know that often, and I think this is especially true for dads, you want to try to solve everything yourself, but when you’re dealing with something like this, it’s, often, well, one, something that’s not solvable because you’re not a doctor and you can’t change what’s going on in your child’s body. But also having people around you is really important. And I think if you try to do it all yourself, you’ll end up burning yourself out. But also it can pile up too, where you end up with depression, anxiety, because you’re internalizing it all and you’re not letting it out.

David Hirsch: Yeah, good advice. the importance of asking for help, whether that’s through counseling like you made reference to, or just reaching out to others, trying to plug yourself into a community of like minded parents or dads for that matter.

JP: I appreciate your being open and authentic about leaning in

So thanks for sharing. I’m wondering if there’s anything else you’d like to say before we wrap up.

J.P. Klop: Not really. Thank you for, you know, this opportunity and talking about these things. I’m fairly new to this community and I can’t say that I feel like I know a whole lot yet I’m, I’m still learning many things.

David Hirsch: Yeah, well, I just really appreciate your being open and authentic to leaning in, right? a lot of dads with kids as young as yours might still find themselves in denial, not accepting the reality of their situation and, maybe not leaning in the way that you and Leanne have. So I applaud you for taking the initiative to do so. If somebody wants to contact you, what’s the best way to do so?

J.P. Klop: They could send me an email. My email is jpkloptlook.com I’ll be sure.

David Hirsch: To include that in the show notes and maybe a connection to your LinkedIn profile. I know, people make use of LinkedIn and some of the other social media for that matter. Jp, thank you for your time and many insights. As a reminder, JP is just one of the dads who’s part of the Special Fathers Network 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 21st CenturyDads uh.org Thank you for listening to the latest episode of the Special Fathers Network Dad to Dad Podcast. I hope you enjoyed the conversation as much as I did. As you probably know, the 21st Century Dads foundation is a 501c3 not for profit organization, which means we need your help to keep our content free to all concerned. Would you please consider making a taxactible contribution? I would really appreciate your support, J.P. thanks again.

David Hirsch: Thank you dad to the dead. You’re not on your own. We walk this road together, hard and home.

David Hirsch: 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 21st.

J.P. Klop: Centurydads.Org and if you’re a dad looking.

David Hirsch: For help or would like to offer.

David Hirsch: Help, we would be honored to have.

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