184 – Agust Kristmanns of Reykjavik, Iceland, Board Member of Einstokborn, Father of 3, Including a Son with 2Q37 Deletion Syndrome

Transcript:

Agust Kristmanns: I just want to thank you guys. Thank you for the conference, and thank you for accepting me into this, and thank you for helping me, taking me with open arms when I asked you if you could help, because I think it’s very much needed that we start this group here in Iceland. Iceland is a harsh country, with long winters with no daylight, and then full summers with no nighttime. So I’m just so thankful for knowing that this was something I could take up and run with.

Tom Couch: That’s our guest this week, Agust Kristmanns, an Icelandic electrician with three children, one of whom has a very rare condition called 2Q37 Deletion Syndrome. Only 300 people in the world have been diagnosed with this condition.

We’ll hear Agust’s story, including his effort to start a Special Fathers Network in Iceland. It’s a unique tale and one you’ll enjoy on this Special Fathers Network Dad to Dad Podcast. Say hello to 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’d be honored to have you join our closed Facebook group. Please go to facebook.com/groups and search dad to dad.

Tom Couch: Now, let’s hear this conversation between Agust Kristmanns and David Hirsch.

David Hirsch: I’m thrilled to be talking today with Agust Kristmanns of Reykjavik, Iceland, a father of three who works as an electrician and serves on the board of Unique Children of Iceland.

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

Agust Kristmanns: Yeah, thank you. Thank you for having me.

David Hirsch: You and your wife Maria have been married for 23 years and are the proud parents of three children, Asta Murray, 23, Sarah Dug, 15, and middle child, a son, Ingi, 20, who was diagnosed with 2Q37 Deletion Syndrome, a rare chromosome condition that affects his development.

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

Agust Kristmanns: Yeah. I was born and raised in Olafsvik. It’s a very small fishing village in western Iceland. There’s about 1,000 people living there, and I was raised by my grandparents from two months old and they adopted me.

I lived in Olafsvik until I was 14, and I was all into sports, like soccer and handball and skiing of course. I went fishing a lot with my grandpa, who had a fishing boat. And yeah, it was a happy upbringing in the middle of nowhere, and I had no concerns in the world.

David Hirsch: Well, thanks for sharing. Did you have any siblings when you were growing up?

Agust Kristmanns: Because I was  raised by my grandparents, I was raised as an only child in the household, but I have four half-siblings that lived with my mom and with my dad. And then also I was raised more or less with my mother’s siblings.

They were  household names in my upbringing, because they lived in the same village. And when my dad remarried, his wife has three kids, my stepsiblings. So there’s a lot of names to remember, but I was raised all by myself with my grandparents.

David Hirsch: Okay. Well, thanks for sharing. I’m sort of curious to know, what does your dad do for a living?

Agust Kristmanns: My dad is a goldsmith, and he has been working for the Tama Goldsmith Company, but for most of his time he’s been a fisherman and taxi driver, but he stopped doing that 10 or 15 years ago, and went back to Goldsmith.

David Hirsch: Was that in Iceland or was that in Spain?

Agust Kristmanns: In Tama. He moved to Tama to work for Kior Ganson. And he also had been working here in Iceland in the family business of goldsmiths, and then he moved to Spain to retire.

David Hirsch: Okay. So he is moved to Spain in retirement. Got it. Thanks for the clarification. I appreciate it. And I’m sort of wondering, how would you describe your relationship with your dad? Even though you grew up with your grandparents, how would you describe your relationship with your dad?

Agust Kristmanns:  I more or less always knew my dad. He came to visit us, or I came to the capital to visit him, maybe two or three times a year. And when I moved to Reykjavik when I was about 14 years old, that was when I started to get to know him better and started a relationship with him. And as soon as we clicked, we have more or less been like best friends and soulmates.

He had a drinking problem when I was growing up, and that’s why I moved to my grandparents’ home. Both mom and dad had a drinking problem at that time in their life. But he had stopped drinking, before I moved to Reykjavik, so it made it easier to start a relationship with them.

David Hirsch: Well, thanks for sharing. I appreciate it. I’m wondering, the grandparents that you grew up with—were those your mom’s parents or your dad’s parents?

Agust Kristmanns: My mom’s parents, yes.

David Hirsch: Got it. So how would you characterize your relationship with your maternal grandfather? This is the one that raised you from two months to 14 years.

Agust Kristmanns: Fantastic. He taught me all about family values and work ethics. He always allowed me to go with him on the fishing boats and later to his fishing company. I started to work at his company when I was like eight or nine, cutting up fish and all kinds of stuff.

David Hirsch: Oh, wow.

Agust Kristmanns: And more or less I’ve working with them from them on. When I wasn’t playing sports or going to school, I was all hands on deck when there was a lot of fish.

David Hirsch: Out of curiosity, what type of fish were you guys fishing for?

Agust Kristmanns: Mainly cod.

David Hirsch: Yeah. And was that a commercial fishing boat then? Did he own a fishing business?

Agust Kristmanns: We had a small three-guy boat with hand fishing gear. And then he bought other fish from other sailors, other fishermen. Then he mostly sorted fish for Spain and Africa. All the heads [?] went to Nigeria, and all cod filets went to Spain.

David Hirsch: Very interesting. Well, thanks for sharing. So from an educational standpoint, I know that you started out in culinary school for a couple of years, and I’m wondering, what were you thinking? What was your ambition at that point in time?

Agust Kristmanns: I always loved cooking and helping my grandma in the kitchen and all that. And I was taking culinary school to get my diploma as a food specialist, examining food—and then I gave up on that. Then I met my wife.

David Hirsch: Okay, so you transitioned from a focus on pursuing a degree and working in culinary to being an electrician. And I’m wondering, how did that transition come about?

Agust Kristmanns: I have always been fond of the electricity field, getting shocked at an early age, and all that kind of stuff. I’m extremely curious, so I have to know how things work. I was taking apart the radio and putting it back together, and wondering why it works when I have half of it on the table when I assembled it again. And then I just studied in school for one year and was offered a job in the field.

David Hirsch: Okay. And from what I remember, you’ve been an electrician for about 20 years now. Maybe a little bit more than 20 years. What company do you currently work for, and what is your role there?

Agust Kristmanns: I’m electrician at a company called El Max and I’m a foreman. There is the owner, and then me, and then we have like ten guys. We do high end electricity in high end apartments and buildings.

David Hirsch: Okay. Well thanks for sharing. I’m sort of curious to know, how did you and Maria meet?

Agust Kristmanns: Yeah, when I moved to Reykjavik, I got to know my step siblings. And it’s simple. Maria is my stepsister’s best friend. We met early on when I moved there, and we always liked each other. I didn’t have the nerve to go on a date or something. And it wasn’t until my sister got tired of me talking to my sister, or Maria talking to my sister about the other, so she called us and invited us to a movie. And then she didn’t show up, so it was just me and Maria. And we’ve been together ever since.

David Hirsch: I love that story. Thank you for sharing. Not quite a blind date, but pretty close to it, because you already knew each other, right? Okay, well, let’s switch gears and talk about special needs, first on a personal level, and then beyond. And I’m sort of curious to know before Ingi’s diagnosis, did you or Maria have any connection to the special needs community?

Agust Kristmanns: Not at all. We didn’t know anybody. We are both from western Iceland in small villages. We did not know anybody with special needs.

David Hirsch: Okay. And I’m sort of curious to know at what point in time after Ingi was born did you realize that there were some differences?

Agust Kristmanns: He was about one year old. Then we noticed that he was not doing things that his older sister was capable of at the same age. Soon after that we got him examined, and there were signs of hypotonia. Then it moved into not speaking and always having loose joints, always falling. That was the beginning of his journey. We didn’t get any diagnosis. It was just a little this and a little of that. Just small problems here and there.

David Hirsch: My recollection was the diagnosis didn’t take place until he was 10 or 11 years old—the actual diagnosis, once the DNA testing was available. So I’m sort of curious to know, over the first ten years or so of his life as more testing was done and he was having challenges with his joints, did he ever begin to talk? Or is he still non-verbal?

Agust Kristmanns:  He started to talk at about five or six. Not that other people understood him, but we understood him, and the daycare understood him, but nobody else. So yeah, I think he was about six when he started better talking, but still like a three year old or four year old. He had to go to speech therapy every week for about five years. I took him to speech therapy and fine movement therapy, occupational therapy. That was every morning from eight to ten.

David Hirsch: So my recollection was Maria is a special ed teacher, so she probably has some experience working with other individuals that have differences. Is that the case?

Agust Kristmanns: Yes. She’s been working with special kids for about five years now. First in kindergarten and now in regular school. And so she is working a great job there. She uses her knowledge and can give very good advice. She is doing a great deal.

David Hirsch: That’s fabulous. So I’m sort of wondering, what are some of the fears that you and Maria have had after you got the diagnosis, and during those early years while you did not have a formal diagnosis?

Agust Kristmanns: It was very hard for the first 11 years of Ingi’s life when we had no diagnosis. We had no knowledge of what was going on. Nobody knew. We would have answers from this doctor and have answers from that doctor. So we were very worried. We were more worried about what the future would hold for him. Would he talk? Would his autism become a bigger problem? All those kinds of things.

Then after getting the diagnosis, we then looked at all the problems following that condition. There were a lot of problems that we didn’t know of, like heart condition and kidney problems and bone structures problems. So that was another chapter in our worrying. The doctors needed to operate on his joints several times, and making decisions about that was very hard, because we didn’t know if it was going to do something better for him. Nobody knows about this deletion here in Iceland, because he is the only one in Iceland with this deletion.

So yeah, it was very, very long time getting to know all those problems that had been going on for ten years, but nobody knew about them, nobody had the time or thought about examining him to the full extent. And that bothered us quite lot.

David Hirsch: Yeah, it sounds like it’s been quite a journey. I’m wondering now, with the advent of the internet and Facebook groups and things like that, if you’ve been able to connect with other parents who have a child with a similar diagnosis.

Agust Kristmanns: Yeah. We found a group a few months after the diagnosis, and it’s been a great help, because there are only about 300 people with this syndrome. And getting to know people with the same problems, being able to talk to somebody who knows what to expect, what to look for, really helped. Also we could see the similar similarities in the kids, because they all look quite the same. So yeah, that was fantastic. And when we went to the States in 2018, we met a few families, and that was a fantastic trip. Even though the kids were meeting for the first time, it seemed like they knew each other forever.

David Hirsch: That is remarkable. Yeah.

Agust Kristmanns: Just to be able to see other people who are the same as you was so fantastic.

David Hirsch: Yeah. Well, thank you for sharing. I’m wondering, what’s the name of the group?

Agust Kristmanns: 2Q37 Deletion.

David Hirsch: And is it a Facebook group, or what is it?

Agust Kristmanns: It’s a closed Facebook group. There are two groups. One is closed and one open.

David Hirsch: Okay, well, I’m gonna make a note of that and put it in the show notes so anybody else who might be listening will know about that resource as well. I’m wondering, was there some meaningful advice that you and Maria got early on that’s helped you navigate this challenging situation?

Agust Kristmanns: No, not really. Like I said earlier, we didn’t know any people with special needs, either kids or grownups, and nobody in my family or Maria’s family knew of special needs. And because his deletion wasn’t found out until he was 11, we had to build our own path and make decisions and navigate through the system by ourselves.

In Iceland, you have to have a name to a thing to get everything. And because this was an individual with smaller this and smaller that, he didn’t really fit in with the system. So we more or less had to do everything on our own. And it’s both a good and a bad thing.

So we look at it like it was good thing, because we didn’t get the shock of having a disabled kid. We are just working on problems until he was 11. And  so the diagnosis didn’t affect us as much, because knew that he had problems. But we were so involved in finding ways to help him. Going through the school system and getting everything they needed, we didn’t have time to think about things. We just had to do it, and we had to find a way together to do this together. Does it make any sense?

David Hirsch: Yeah. Well, I admire you for your perseverance. It sounds like it was quite a challenge because without a diagnosis, without a label, you weren’t able to access the different services that you might have been able to with the diagnosis.

And I don’t want to focus on the negative, but just to be authentic, what were some of the other challenges that you and Maria, and Ingi faced, for that matter?

Agust Kristmanns: It was more or less getting him into special ed school, for example. We had two year open battle. We had to sue the ministry of schools and also the ministry in Reykjavik to get him into the special ed school classes, and they constantly fought us with all their power.

It took about two years of battling very, very hard on national news, in the papers, writing journal segments, and getting people to understand why we were battling it out. We got huge support from the special ed community and also from our community with the kids, the community where Ingi grew up with normal kids, so say, and so that brought us to fight even harder. And finally we got conclusion that the government was amiss in not allowing him into the school.

So that was a very hard time because, for example, my oldest daughter, even though we tried to involve her in everything and talk to her at that time, she didn’t want to bother us. We were busy on doing something else, and she just stopped talking about her problems and that resulted in problems later on. So, yeah, it was very hard.

David Hirsch: Yeah, it sounds like it, and I admire your perseverance to advocate for Ingi’s educational rights. But like you had said, the disadvantages, you were putting so much time and energy into what was right for him, that you probably missed out on some situations you needed to attend to with your other children. Which is not uncommon, you know, with a family with special needs.

And I’m wondering what impact Ingi’s situation has had on his siblings. You had made reference to one that your older daughter, Mariesta, had stopped communicating about what some of her concerns were. I’m wondering if there have been any other impacts on both your daughters. 

Agust Kristmanns: When they were younger, they had more problem regarding this, regarding their friends, because Ingi is very open and wants to love everybody. So he was always involving himself with their friends and everything. Later as they grew, they’re thankful for Ingi, because they both talk about how Ingi makes them better people, makes them realize that things are different and they have to be patient. They have to read people better.

My oldest says she found her way in going to nursing school, and she is doing a fantastic job there and is going on to be a midwife. And she says her role as Ingi’s older sister gives her assets in her work as a nurse, because she’s able to attend people differently than the other girls.

David Hirsch: Well, no doubt she’s learned a little bit about growing up with somebody who has differences. And like you said, part of it is developing the patience, right? Not getting frustrated as easily, and then trying to figure out how to communicate, because that oftentimes is one of the challenges, the communications barrier.

So I’m glad to hear that there are some silver linings, some positive things that have come out of all this. Because it’s a struggle. No doubt you, Maria and the rest of your family have all had to make some sacrifices, and hopefully you can look back and say, “We made a lot of the right decisions. We did the best job we could with the information that we had at the time, and things are going to work out okay. It’s not as overwhelming, hopefully, today as it was ten years ago.

Agust Kristmanns: When we started this journey 20 years ago, we always decided to take a positive view. Of course, it’s difficult to bring up a disabled kid, but we have always kept on going with the positivity and his good options. So, yeah.

David Hirsch: Have there been any organizations that Ingi has benefited from, or your family has benefited from, from the time he was young and up until now?

Agust Kristmanns: There’s only been, we’ve been using Einstokborn, Unique Children of Iceland. We started there when he got the diagnosis at 11. So we’ve been using that extensively, both by connecting to other people, other parents, and also getting to know things about rights and guidance into the system. But especially connecting with other parents that have unique children—that’s been most helpful in our life.

David Hirsch: So I’m curious to know a little bit more about the organization, because I know that you’ve been serving on the board for the last four years. How many families does Einstokborn actually serve on an annual basis?

Agust Kristmanns: There’s about 500 families, and it’s managed by parents. It doesn’t get government money, so we raise all the money ourselves. We have one employee, and we have few activities all over the year. We try to do fun things together and talk about our kids.

David Hirsch: So would that include kids with Down syndrome, cerebral palsy, autism, rare deletions, everything? Or is it certain types of conditions?

Agust Kristmanns: It’s conditions where there are less than one per 10,000 people in the world. Other conditions, for example Downs and autism, they have their organizations. So this is more or less for kids with no organizations to support them.

David Hirsch: I was going to say, it’s mostly for individuals with rare diseases. That’s what I would describe it as. Thank you for the clarification. So I know that you’re interested in helping other dads, right? That’s one of the things we talked about after you attended the conference, and I’m sort of curious to know, what motivates you to do that?

Agust Kristmanns: Because this journey has taken me both high and low in everything. And fortunately, when I’m low, my wife is high, and then the other way around. So we have always been able to bring the other one up. But a few times I’ve taken a longer time than my wife. And this past winter I crashed completely. I think I was at my lowest point when I saw the ad for the conference. So I said, “Why not? What the heck? I don’t have anything to do. So let’s just look at this.”

And I saw the power of dads, because dads don’t talk too much about their difficulties, especially in this field. Seeing at this conference groups of dads sitting together talking about their kids or sports or just anything really helped. Just to know you are in the same boat.

There’s never been a dad to dad thing in Iceland, so it helped me a lot, realizing that dads can help other dads. At the conference, I more or less got the strength to admit to myself that I needed help, and I got the help. I’m doing stuff in therapy to get myself back up. But knowing just the power in dad to dad talking, I decided to talk to my colleagues on the board regarding making this happen here. And we decided to try it.

The first one will be in early September. We haven’t decided the time, but we’ve been talking to people, including psychiatrists, doctors, and such, to come maybe once every other month to get us started and to talk about their field. Then every other month besides that, we’ll be just guys hanging out, talking about whatever we want, getting the advice.

Because Maria and I have been through so much, and we openly talk about our problems, over time other parents have contacted for advice. So I know that I have a lot to give, and I’ve given a lot of myself to other people. So I know how meaningful that is.

David Hirsch: Yeah. Well, I admire you for taking the initiative to do something that would benefit other dads. And most of the dads in the Special Fathers Network who are in the Dad to Dad program—there are about 500 of them—have said, I wish there was something like this when I was a younger dad.

Somebody’s got to start it, right? Somebody’s got to do something like we did a few years ago. And I’m happy to support whatever efforts you have made and provide you with information and ideas to help you be more successful so that it’s a more meaningful experience for as many dads as possible. So thank you for taking the time and having a vision.

I’m thinking about advice now, and I’m wondering if there are any thoughts you’d like to share with a dad who might be listening. And again, the dads who might be listening to this podcast are not just the dads who are in the US, but let’s hope that you can get a bunch of dads there in Iceland to listen to this podcast as well.

So I’m wondering, what advice would you offer dads overall, and then maybe specifically if they’re in Iceland?

Agust Kristmanns: Talk. Most importantly, talk to somebody. It doesn’t have to be your wife, doesn’t have to be your best friend. Just find somebody to talk to. Also, especially if you are in a relationship, if you have a wife or a girlfriend, and you are struggling through all the difficulties regarding your kid, find somebody to babysit for a night, for a weekend, or just two hours, and do something together.

You have to do like when you fly—you have to put the oxygen mask on yourself first before you help your kids or those in need. So your head has to be in the right mindset. So in order to help your kid the most, parents have to be able to disconnect from it and take care of themselves. That’s the foundation for best helping your kid, I think.

We’ve been fortunate enough to have people around us that can take care of him, and now he spends one week a month in a home with other disabled kids. So we use that time both with the girls and with ourselves. So we take a long weekend, or go out to the countryside, or go to the UK, or go on a trip together. So, yeah. Talk, and take care of yourselves. That has helped me the most.

David Hirsch: I heard you say three things. One is to communicate, talk with people. Open up, because most men are not very open. They’re closed. The joke, at least here in the United States, is that we’re the gender that won’t pull over and ask for directions when we’re lost. Thank God for GPS. That’s probably saved a lot of relationships.

And then the second thing I heard you say is that it’s important to find time to work on your relationship, right? Get respite, even if it’s for just an hour or two hours at a time or overnight. But you need to be very intentional about making time for one another and finding somebody, whether it’s a family member, friends, or people that you’d have to hire, to provide you with that personal time so you can  decompress from the day-to-day challenges.

And then the third thing I heard you say is that it’s important to stay healthy, right? The analogy about putting your oxygen mask on first before you can help somebody else. You have to stay strong physically. You have to stay strong mentally, if you’re gonna be able to be the best husband, the best father, the best person you can be. It’s hard to do that if you’re not physically and mentally strong.

So we’re thrilled to have you as part of the Special Fathers Network, and I’m really excited about trying to help you get a group of Icelandic dads together and see if we can  build on that idea that you have. And I’m wondering if there’s anything else you’d like to share before we wrap up.

Agust Kristmanns: I just want to thank you guys. Thank you for the conference, and thank you for accepting me into this, and thank you for helping me, taking me with open arms when I asked you if you could help, because I think it’s very much needed that we start this group here in Iceland. Iceland is a harsh country, with long winters with no daylight, and then full summers with no nighttime. So I’m just so thankful for knowing that this was something I could take up and run with.

David Hirsch: Fabulous. So if somebody wants to learn more about Einstokborn or to contact you, how would they do that?

Agust Kristmanns: My email is agust.kristmanns@gmail.com. Then there’s a webpage for Einstockborn. Go to www.einstokborn.is/is/english, if you want to view it in English.

David Hirsch: I’ll be sure to include both those in the show notes so it’ll make it as easy as possible for somebody to follow up with you. Agust, thank you for taking the time and many insights. As a reminder, Agust is just one of the dads who’s 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 conversation as much as I did. As you probably know, the 21^st Century Dad’s Foundation is a 501(c)3 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.

August, thank you again.

Agust Kristmanns: Thank you. 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 are matched up with mentor fathers in a similar situation. It’s a great way for dads to support other dads.

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. Please be sure to register for the Special Fathers Network biweekly Zoom calls held on the first and third Tuesdays of every month.

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: To find out more about the Special Fathers Network, go to 21stcenturydads.org. This program was produced by me, Tom Couch. Thanks for listening to the Special Fathers Network Dad to Dad Podcast.