In this Dad to Dad podcast host David Hirsch talks to Shane Sondergeld, a doctor from Brisbane, Australia. Shane is a father of three children including William, who was diagnosed with 4Q deletion syndrome, a rare genetic disorder. Shane tells the Sondergeld family story and how having a child with a disability is truly a wonder. That’s all on this Dad to Dad podcast.
Dad to Dad 72 – Shane Sondergeld, A Doctor From Down Under Whose Son Has 4Q Deletion Syndrome
Shane Sondergeld: Having a child with a disability is not a negative. There is just so much wonder to be seen if you can, if you just go looking for it. That’s Shane Sonder Guild, a doctor and father of three children, including William, who was diagnosed with four Q deletion syndrome, a rare genetic disorder. The Saundra gal family lives in Brisbane, Australia.
Tom Couch: And we’ll hear their story on this dad to dad podcast. Here’s our host David Hirsch.
David Hirsch: Hi, and thanks for listening to the dad to dad podcast, fathers, mentoring, fathers of children with special needs presented by the Special Fathers Network.
Tom Couch: The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process.
New fathers with special needs children connect with mentor fathers in a similar situation. It’s a great 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.
Shane Sondergeld: And now let’s listen in to the conversation between Shane Sonder Guild and David Hirsch.
David Hirsch: I’m thrilled to be talking today with my friend, Shane Sondergeld, a medical doctor and father of three, who lives in the gap, a Northwest suburb in Brisbane, Australia.
Shane, thank you for taking the time to do a podcast interview for the Special Fathers Network. And for the record, Shane is the first, what we hope will be many special fathers network, dad to dad podcast interviewees. From down under for inquiring our listeners, we met in Portugal while on a riverboat cruise on the Duro river.
This past summer, you and your wife, Leanne had been married for 33 years and that the proud parents of three children, George 28, Louisa 23 and William 25, who was diagnosed with four Q deletion syndrome. A rare chromosomal disorder. Shane, thank you for taking the time to do a podcast interview.
Shane Sondergeld: My pleasure. I feel very honored to be the first Aussie to be on your podcast.
David Hirsch: So let’s start with some background. Where did you grow up? Tell me something about your family diabetic.
Shane Sondergeld: I was born in Brisbane in Australia. Now there are States in Australia and the state that I’m in is called Queensland in Brisbane is the Capitol, but Queensland.
So I was born in Brisbane and my family and I lived here until I was fine. My mother had been married twice. I have two older sisters there when I was five. They stayed in Brisbane and mum, dad, and I, we moved out to the Bush as we probably in Australia, in other ways to a rural area, probably about four hours to the West of Brisbane, a little town called Texas.
David Hirsch: Would you believe when we think of Texas in the States? We don’t say little. Texas.
Shane Sondergeld: It’s very large. Yeah. They’re actually connections. You see, because I think that the explorers that first were in that part of Australia, they tried to stake a claim, I think, in that area. And what happened was they left and when they came back, I think the Aboriginal population had moved back in again.
But I think there was similarities between staking claims in Texas USA and between. I think, um, Mexican people being there and being moved on, but coming back to once they came back to state their claim. So there was a similarity. That’s the reason why it was called Texas. Excellent.
David Hirsch: So it’s the Queensland new South Wales border from what you said,
Shane Sondergeld: that’s correct.
You South Wales is the state immediately separate groups.
David Hirsch: So, uh, what does your dad do for a living?
Shane Sondergeld: My dad was a postmaster. He came from very humble beginnings. My surname Guild is German and his ancestors actually came to Australia in the 1860s. And his branch of the family lived about four hours to the North of Brisbane, outside a town called Bundaberg.
And there was sugar cane farmers, uh, but there really was quite a subsistence living and it was very difficult for him because his parents were extremely poor. He was an only child and, uh, his mother. It was very generous of heart. His father was quite a harsh father and, um, he was a difficult upbringing for him.
He left home after his father’s death at the age of 14 and joined the post office at around about that time. Maybe he went on to serve over 50 years in the post office. And the greatest proportion of those was a postmaster in front of him.
David Hirsch: Recall, you had mentioned that his mom, that would have been your grandmother, she had special needs of her own.
Shane Sondergeld: He is so cheesy. She suffered epileptic seizures, and these would occur around about the time of their periods. And so for an adolescent who lost his father, uh, dealing with motherhood clearly had significant medical problems. I’m sure would have been, but a challenge for my dad. And it was only because there was family around her that he was actually able to leave home.
Otherwise I really had no what his future would have hoped.
David Hirsch: So very humble beginning, like you had mentioned and 50 years as a postmaster and that wasn’t in one location, but my recollection was that he had moved around there for your family and moved around a bit. Is that correct?
Shane Sondergeld: Yeah, that’s correct.
Uh, when I was born here, it wasn’t a postmaster, he was a postal clerk. So in other words, why do I down the picking water in the local suburb where we lived in Brisbane? So Texas was seen as a great opportunity for him to actually further his career in the post office. And that’s the reason why we moved out there.
It was a promotion from my dad. And did you end
David Hirsch: up moving back to Brisbane though?
Shane Sondergeld: We spent 70 years out there, David, and they were very, very happy. Um, that was heavily involved in the town and both the church and the lion’s club and was highly regarded as the postmaster there. In fact, Tim, he said and used there.
He had one week off for simply in all of that time. In fact, I was the only week off. He had some in all of his career that’s because my mother required surgery. He took that week off to care for her. So he was very highly regarded. My mother was a music teacher in the town, and of course I went through my primary school, not words, grades one to seven happy before we moved back to Brisbane.
But I’m in back by myself. I was fortunate enough to win a scholarship to. A very good private school back in Brisbane. So I moved back and stayed with one of my oldest sisters for the first few, uh, before dad could get a transferred to a Brisbane post office. So he and mum followed when you left. Got it.
David Hirsch: So how would you describe your relationship with your
Shane Sondergeld: dad? Ultimately, it was a wonderful relationship and I say that because my recollections of growing up in Texas, I would see various sides of dead. I certainly saw what the town’s folks saw in terms of his absolute reliability, integrity, honesty, preparedness to contribute, but he was a hard father.
He was very much a disciplinarian where my mother, I guess, was probably very similar to his mother. Mum was very generous. There was nothing too much that she could do for you. So, um, It was pretty much a case of spare the rod and spoil the child. I don’t know whether you’d have that same
anyway. That’s what it was like for me growing up with dad out there, that’s it, it was still a very affectionate relationship. I would always kiss him. Hello and goodbye, and good morning and good night. But one of those interesting things, when you’re 12, about to 10 13, and you move away from home and you go into.
The very testosterone, charged environment, all of an elite private school, very competitive, and, um, the mores, they were quite different to what I’ve experienced at West. So then when mum and dad came to join me a year later, it was no longer comfortable for me to be this affectionate with my father. And it took years for that relationship to reestablish.
And I was so glad when it did it reestablished at a time when I was first married, believe it or not. And my wife and I were living overseas and mom and dad came to visit. I think it’s one of those things that when you’re more mature and you’re away from home, you really do appreciate what you’ve lost when you don’t have your parents and family close by.
So it was reestablished then, and it culminated in debt in his mid eighties having lost mum almost 20 years before. Coming to live with us. Now that only happened because Leanne, my wife treated my father as her father because indeed do I treat a similar? And so he came to live with us and he said so many times they were the happiest piece of his life.
Just being involved with our family, with the children coming and going. And it meant too that I didn’t have to try it to drive around to his place all the time and make sure that he was like, Hey, he was eating. And it was just a wonderful, wonderful time. I
David Hirsch: think you had mentioned in a prior conversation, that it was your children has grandchildren that really helped transform his life.
Shane Sondergeld: I think that’s very true. It’s interesting diver, the way in life we learn to love. And even though I know very little about dad’s upbringing, I mean, some very scattered secondhand comments. He came from quite a harsh, emotional environment. He married when he was in his early thirties, he certainly doted on me in his head.
Wayne supported me as best he could, but it’s one of those things because he was more mature. And then into his life come these small children who were his grandchildren, he is because I was his only blood son and they just started on him and he was a new mandate, but he was a new man. He just blossomed with all of this love.
Well, I guess absolutely correct attendees life around.
David Hirsch: Well, I think that part of it most have been the fact that he was living with you. I think you referred to it as a granny flat, um, where he was on the premises. Right. So you were seeing him every day. You didn’t have to go check on him as what I remember you saying.
And he was like part of the family, right? Just there on a day to day basis.
Shane Sondergeld: That’s correct. He was quite self-sufficient because he was used to being self sufficient. Um, it was interesting the way that we had the architect, that designs, because he had lovely living space, which was quite private and yet 15 seconds he’d be in the main area of the house interacting with us.
So he was quite happy to go and buy his own food and cook for himself most of the time through the week. But on the weekends, when we were home, he would always. Eat with us. If we have guests over, he would be part of the, um, the actual celebration that we might have, but he just loved it and thrived.
David Hirsch: That’s fabulous. And from what I remember you saying, he lived into his mid to late eighties and he died just three or four years ago.
Shane Sondergeld: That’s correct. He died at the age of 87 and a half. He died quite sudden and unexpected. I came home one night to find that he was in bed and he was doing interesting thing.
David, you see. Dad towards the end developed a little interesting one. It was, I mean, little interest, but it was his great pleasure on a Friday night when Leanna and I would come home to make sure that a bubble of raid was either opened or we had a bottle of white children, the fridge, and he would subscribe to these wine places.
And this was his, his little specialty and a treat for us. And so it was wonderful to come out on a Friday. We’d just sit down and reflect on the week and relax over a glass of wine. And I guess the already is the evening that I came home expecting to do exactly. This was a Friday evening and it was so different because I came home and his granny flat was in darkness and I was the first one home.
So did the house was in darkness. And are we looking for him and couldn’t find, and all the usual places even find my sister and my wife and say, don’t, is he up with you? And he wants them. And we have quite a large property. It’s 10 acres and a bed. Even up to the age of 87 would be out clearing vegetation, doing all sorts of things around the place.
And I was hoping that he wasn’t. That on the property somewhere. So I opened the garage door if he’s cut and sure enough, his car was there. So that’s why I entered his granny flat winked through to his bedroom. This time turned on the lot and it was dead in bed quite still, quite cold. The interesting thing was he saw me and our middle boy, we involved that very morning and he was due to be in church, working be one hour raiser.
He never made that working group. So clearly been feeling quite well when he saw her assault. But assuming that, um, he must’ve had a very sudden numbness, which made him take to his bed and he never Rose from the bed.
David Hirsch: Yeah. Well, I guess the one of the silver linings, if you can say that, isn’t, it, it wasn’t one of these long drawn out painful illnesses that lasts for months or years and years.
Um, the disadvantages, you don’t have a chance to say goodbye.
Shane Sondergeld: Absolutely correct. Yeah. My mom died from a brain tumor some 20 years before. So you look at the difference between the two deaths and there couldn’t be more start.
David Hirsch: Yeah, well, sorry to hear that he died too abruptly, but it’s a blessing that he lived to 87 and a half.
And that you got to know him not only as a young person, but as an adult and that he had a real relationship with his grandchildren well
Shane Sondergeld: and disorder.
David Hirsch: So, um, thinking about your dad now, you had mentioned, uh, sort of the. Positive characteristics, the honesty, the integrity, the reliability, sacrifice independence.
Is there any other lesson or thought that comes to mind when you think about your
Shane Sondergeld: dad? Oh, very much. So. Remember I said that my mum was a music teacher at waste, so they had full, I grew up as a very much a boy, two year old, listening to my mother, prepaid for prepay, for diplomas on the piano. And also one of my sisters doing the same.
So I can play my first song on the piano when I was two. Cool, God save the queen, which of course is the British national. But the interesting thing was that when I entered medical school, the way that I supported myself was initially playing jazz either. I’m here. No we’re on people. It’s a nice size.
Wasn’t a Yamaha organ. I would have to go and do these jobs. And Deb would always come with me that he modified a car. He had an old Toyota crown. And he modified it, put platforms in it. So we can put the organ, the speaker, all the paraphernalia that had to go with it. And these jobs would be four hours at a time.
And often on the other side of the city. So dad would always help me to do this. He would load the car with me. We’d go to the job. We’d load the Orkin, set it up. And dad would rather stay in the car or the four hours later, he was always there. We don’t pack it. We take it back to the car and that time he would come.
And he would do this without a second thought in terms of any sacrifice that he’d be making, because he was doing it for me, that was all the joy that he needed. And that was absolutely apparent from every job David, I would contribute $5 of what I learned that would match with $5 a years. And that would go into an account food to fund my textbooks.
And it’s hard not to be influenced by that. I’m sure you feel the way about the same way about your children, but I love it. When my children asked me to do something for them, or even if they’d done, it gives me such great pleasure, um, to be involved in the lives of my children to do whatever I can for, they have betterment.
And I mean, that’s something I got from my
David Hirsch: thank you for sharing. So I’m thinking about other father figures or role models, and I’m wondering about your grandpa’s. Uh, perhaps starting on your dad’s side, you mentioned he’s a German immigrant and then on your mom’s side.
Shane Sondergeld: Well, certainly my grandfather on my dad’s side came from German stock, but he was born in Australia.
I think I’m about six generation now in Australia. So my grandfather would have been fourth generation or so, so I didn’t know him because he died when my dad was about 14 by only know him by some of the stories that dad told through the years. And that’s why. I gained the impression of a very Spartan existence, a harsh existence.
My dad was forbidden to ride a horse for instance, David, in on one afternoon, when he got home from school, he decided they would ride at their back. He fell off and broke a leg and was found by his father in the paddock. It was brought back to the house and, um, given some pieces of wood who instructed.
Uh, you were told not to ride the horse. You can make your own split. Oh, my a flavor of what my dad, I suppose, experienced as a boy, my mother’s father, very different man. He had a very unfortunate first married marriage to a woman. I understand had a significant mental health issue. They had a son together.
They were. All sorts of threats that were going on. And the only way that he could deal with this, by the way, was the, he had to escape that and to do that, he assumed another name and lift the outskirts Sydney in Australia, where he was at that time, his way through rural new South Wales and the rural signed as a Shira and a mechanic, he then met my grandmother.
In the very West of Queensland, a little place called columella and they weren’t married. She fell pregnant, which of course was quite a scandal in the early 1920s. And of course that was my mum who was born after that. They then had another dorsum before they married, I think around about the mid fifties.
So they were together for 35 years, something like that before they got married, which was extraordinary for those times. Now he was a man. That knew how to survive, how to think on his feet, how to gamble had a drink. And he bought totally new perspective to my life. There’s a bit of, there’s a bit of cheek about it.
There’s a bit of bull about him, all that he really does. He likes to stir people up a little bit, but, um, he was also a man who was an extremely hard worker. And, um, because he knew that he could tease my mother by giving me the nickname butterfly. He had great pleasure in calling the blow fly to every opportunity, much to my mother’s annoyance.
They applied flies over the United States to him.
David Hirsch: I don’t know what a blow flight is.
Shane Sondergeld: It’s just a big buzzing, flooded, annoys the heck out of the victim.
David Hirsch: We might call it a horse fly. I think that might be the similar one. Yeah,
Shane Sondergeld: they would move up those there as well. Anyway. Grandma and grandpa would always come over for lunch on Saturday and grandpa was still much the rogue.
We didn’t come for lunch. He’d always like to use my grandmother’s backside. And, Oh, it was really quite my him David. So two very contrasting grandfathers, the latter, I suppose, having some impact on my life, but really I think the people that impacted most of my life and my own parents. And other parents who it is.
David Hirsch: Excellent. Well, thanks for sharing. It’s great that you had a relationship at least with one of your grandfathers, and then you sounded like a very colorful character.
Shane Sondergeld: Were
David Hirsch: there any other father figures when you were growing up or as a young adult that had some influence on you?
Shane Sondergeld: Yes. And the reason I can be so dogmatic about it, that a great part of my life growing up into the state was that my parents were heavily involved in the local church.
And I remember this really from before we’d left Brisbane, but anyone we’d gone out West to Texas, my father was what’s called a warden in the Anglican church out there. And that I think is the equivalent of the Episcopal church in the United States of America. And my mom was the organist there. So we were always involved with the church.
And so as I grew up, there were various priests through the EAs. And also, I guess, too, we had other. And church interests. So we would have a lot to do with religious festivals and activities. Uh, where I say privileged to me, so many decent people, um, many of whom were men and because we would be discussing values just as part of what you’re doing with the new church organization.
It was so easy, I guess, to be influenced by those sorts of people and youth leaders who really. Inculcated wonderful biblical teaching. And to this day, that’s my reference point anymore.
David Hirsch: Well, thanks for sharing. It sounds like you’ve had a lot of good role models, mentors, if you will, and different aspects of your life.
So my recollection was you went to university. In Brisbane in Queensland, that was a six year program. From what I remember you telling me, which included your medical school training and what were you thinking when you graduated from school with your degree in medicine?
Shane Sondergeld: Well, uh, when I graduated from my own school before getting into Benson is interesting, I was very good at languages at school David, I was studying German, Japanese, and English.
I was talking the state and all of these things and it looked as though I was going to go. On scholarship to the premier university in Australia for that, which is the Australian national university in Canberra. Canberra’s the capital of Australia. And then my final year, remembering that our school year goes from February, say to November, it was about Easter.
My final year, just out at Easter, I felt convinced that I was being called to do medicine. And so I explored that and talked it out with my parents. Went to what’s called my housemaster at school. There were various palaces in the school. Clearly the subjects that I was studying, uh, weren’t enough for me to enter medical school.
I hadn’t done chemistry. So I had about eight weeks to complete the two year course and chemistry that really was hit, you know, head down tail up to do that. But anyway, the rest is history. So I did that. And then when you come to apply to university in Australia, you, in those days, you were given a form to fill out and on this form, you have to choose your six top choices.
So you put down your six choices in order of preference. What I did, I put medicine as number one, and I thought about what else might I want to do if I were not to get into medicine? I thought about it and thought about it. And the reality was I felt called to do medicine. I did not feel called to do anything else.
So I left the rest of the form blank. And so, as it turns out, I applied for medical school and nothing else. And that’s what I got into. So I spent six years of university. I spent eight years after that gathering my degrees. But at that point was when I then applied for a job in rural Queensland. And as luck will fight what habits, what was the position that was open?
It was Texas from the Queensland new South Wales border. So I ended up spending another 14 years as a rural doctor in Texas. Well,
David Hirsch: that’s quite a journey. Thank you for sharing. I’m sort of wondering, um, how was it that you met Leanne along the way?
Shane Sondergeld: I remember my mother was a music teacher. Well, when she came back from Texas and into Brisbane, She continued to teach music because, um, dad had, um, a modest income as a postmaster.
So, um, mum would supplement that through teaching the piano, teaching the organ. So when I was going to school, I met this lovely girl who was going to a school not far from mine. And, um, I used to find where most afternoons and kind of check, cause we didn’t pick special meter and night of stats, but turns out that what all is on one of these phone calls.
But Leanne was one of my mother’s pupils. And so she was coming up the hallway and here I was on the phone, the scope and time. And so that’s when she first saw me, but I first saw her in church. Her mom used to go to church instead of doing the am and she joined the youth group undermine. And I can remember, we were once out in some youth group party in the two youth groups, the two age groups were there and this lovely lady from the chief said, I think they’re all trying to marry me off.
There is Leanne West, which is getting into maiden. She believes they might. Why don’t you think about motion? I said, James and I were the lady Jane. I can tell you one thing now. I don’t see myself ever marrying Leanne with well fight words because, uh, we did marry. And we’ve been happily married.
David Hirsch: yeah. That’s a beautiful story. Thanks for sharing that. So let’s switch gears and talk about the special needs community initially on a personal level. And I’m wondering before Williams situation, did you or Leanne have any connection to the special needs? Community
Shane Sondergeld: will sit in the ideas. Who can’t, it’s amazing.
This should link back to Texas, but the local bank manager, when I was a boy had two children, the older of who had quite profound cerebral palsy, my mother had such a heart for any person with a disability. And so our families became grow close as a bank manager. They would move all around. And when we moved back to Brisbane, that’s the time when they moved back to Brisbane.
And we were then immersed in all of these activities because this boy was not only profoundly disabled in the physical sense, but he was also almost blind. So I was invited to go to. How many events for the blind, blind cricket. There’s another thing which is a big black, um, blind tabletops. Would you believe, except you hit the ball underneath the barrier rather than over it.
And the ball course rattus unit
David Hirsch: that would have been your first exposure to somebody with special needs then?
Shane Sondergeld: No, very much so. And it was, it was just a joy and such happy times though.
David Hirsch: Well, it sounds like it. How about Leanne? Did she have any exposure to anybody growing up with special needs?
Shane Sondergeld: No, I don’t believe she did as personally as high, but then once she started going out with me, well, then she would come along to these sorts of events as well.
And when the end went to university, she studied occupational therapy. And as, since completed her doctorate in occupational therapy and works extensively with people that have special needs. So her exposure was more professional rather than social. Okay.
David Hirsch: So, uh, let’s uh, talk about, uh, William situation.
Shane Sondergeld: What
David Hirsch: is his diagnosis and, and when was the diagnosis
Shane Sondergeld: made? William has what is called four Q deletion syndrome. Now four Q deletion syndrome is one array, a chromosomal disorder where a portion of the long arm of chromosome four is deleted. So the way that it then might manifest in a child is determined by how much and the nature of the material lost.
And where on the armor premise it is lost from. So the first thing we noticed with Wil was his profound delay in all areas where other babies would be rolling over or sitting up him couldn’t do that where they would be babbling with him. Couldn’t do that. In fact, the speech was always but rudimentary for many, many years.
He was always a floppy book. And for that reason, um, his peers were up and walking, but William was well and truly past his second birthday before we could even get him onto his feet land walking with any sort of shorty. So it was around about this time, I guess, that members of the family was starting to vocalize some concerns.
I clearly had some concerns for some time and had spoken quietly. To Leanne about those, but we just resolved relating goatees and pies. There wasn’t much to be gained very, very early on I’m doing anything. And of course the grandparents particularly would not want to acknowledge that there might be some problem with will.
And so you would help comments along the lines that I’m sure many people have heard that Einstein did not speak until he was aged four and other sorts of rationalizations. I think honey against her that they would not be a problem with one of their grandchildren. Anyway, it was around about when he was two that I contacted, um, developmental pediatrician, friend of mine.
And part of the workup that was done, Falwell was crime assemble studies. And that then identified before Q deletion. So then that explained very much. Why will we say developmentally delayed, why their intellectual disability was present? Uh, why he displayed, um, behavioral disorders, including some autistic features to his, um, behavior.
And unfortunately for William as well, he suffered epileptic seizures.
David Hirsch: Wow. It sounds like it was a rather tenuous or overwhelming experience. Um, thinking back at the age range, um, Georgia is a few years older than will, and then we’ll is just a couple of years older than the Lisa. So you have a toddler who’s.
Say three or four years old when this is all going down and Leann was pregnant or maybe just had the WESA, uh, one of the diagnosis is being made.
Shane Sondergeld: That’s correct. And to compound things for the end, when she was pregnant with the reset, she was exposed to a child with chicken pox and the daughter, one of my receptionists at the practice.
So she got quite a significant case of chickenpox and was certainly very possible that we can have. Further congenital problems because of the exposure of the mother to chickenpox. So that was a fraught period because it may well have been the Risa who was subsequently born and could be affected by this because it turns out the episode, the rod wills two and a hockey’s all done.
The lease is two and a half years younger than running. So rules bookended by very high achieving siblings. Um, um, but you’re correcting as much as that. The diagnosis was going down and Leanne was having to spend a fair bit of time at home whilst I was working. And when you work as a rural doctor, David, I was doing 30 days on 24 seven, and then you’d get five days off.
Um, one of which would be spent going to somewhere and one of which coming back from it somewhere. So you have three days off, essentially in about five days. So Leanne was tired and. I was tired and there were all these family things that we needed to address in the three days that we had back in Brisbane were the only times that we could seek some further medical advice and intervention for William.
So it was a very, very full on time.
David Hirsch: So let’s, um, put this four Q deletion syndrome in perspective. What’s the incidence of it, you know, on, um, her 10,000 per a hundred thousand people on the population basis.
Shane Sondergeld: The incidence is one per 100,000 bits. So, when you think about Australia, you might expect two or three cases per year, Australia wide, and the United States, you’ve got significantly more births than reading them.
Now you might have to have up to 40 cases in the U S every year yet when we researched this and we’re talking, you know, 20 odd years ago now, it really was very, very poorly known. So I suspect in those days there were many kitties out there. Perhaps didn’t have a diagnosis. So it’s a very rare genetic disorder.
David Hirsch: Yeah. And how does it usually manifest itself as somebody gets older and is there a life expectancy concern at all?
Shane Sondergeld: It really depends upon if I might use the way the penetrance of the actual condition. So what we mean by that is that, um, there’s great clinical variation, people with four key deletion syndrome that is fine, but I’ve seen the bad will.
We regard ourselves as very, very fortunate with women. I mean he’s verbal. He can walk, he can ramen his own way. He has his interests. He has his friends, but for children that are profoundly affected by this, they will course the delays that I mentioned, the behavioral disorders that I have mentioned that they’re also potentially significant cranio, facial cardiac and other musculoskeletal disorders.
So it’s just really the luck of the draw, David. Wow.
David Hirsch: Well, you had mentioned you’re fortunate that, uh, he’s verbal. He walks, he has his interest and he has friends, which is not a given when somebody has disabilities. And did you also mention autism or did I just hear something
Shane Sondergeld: that’s correct. He does have a number of autistic pages.
That’s that’s that’s not bad really? Because when you look at some of the behavioral traits in kids with certain types of autism, William needs to have order in his life. He doesn’t cope. Well, he needs to be able to know what’s going to happen to plan ahead for that, to anticipate it, to look forward to.
It means that he’s room has to be ordered as well. So things are lined up. It means that if he’s going to be going to what is called help enterprises, which is the institution is probably too strong, a word, but the organization now that assists him to live his life day by day. He needs to know his timetable, what he’s going to be doing.
So, um, he is autistic features in that sense, probably work for them. It sounds
David Hirsch: like he asked to have everything organized and he has to be able to anticipate. And without that, um, he probably gets anxious. Is that what I’m interpreting?
Shane Sondergeld: He does. He gets anxious and, um, he deals a little bit better with change now, but, um, it’s distressing for him if he has unforeseen change.
I wouldn’t want your listeners to think that I’m anyway, trivializing autism about the descriptions I’ve given and how it might apply to wedding. Because as we both know, there’s a wide spectrum of just autistic disorder. And of course there are many more profound clinical features that I haven’t mentioned so well,
David Hirsch: you’re a doctor.
I’m wondering what your first reaction was the time learning about the diagnosis?
Shane Sondergeld: Um, well I suppose where a couple of heads don’t you. From a medical point of view. I was pleased that we had to die. I was interested to know more of that diagnosis because I had not heard of a four key deletions in them, never came across at medical school now from a dad and a husband and a father’s point of view.
It meant that as we grew to know more about what was happening to women and what we might expect, it meant that. We in one sense, we’re ready, I guess, to deal with what the literature was telling us. But, you know, in reality it made little difference that will have been given to us. He was out, um, he was Georgian Luis’s brother, and you know, the grandparents, grandson, he was one of the family.
And so he was very much loved. And he had all the usual spats with brothers and sisters that any other child would have. And you might say, well, did we make allowances for it? I guess, I guess we did because we just, and people were just so kind. So William was brought back to a small rural community.
Remember I found the Queensland new South Wales border and remember that sign, but it takes a village to raise a child. Well, that’s exactly what was happening at the time. Um, if the am was shopping and William took out, took off out of the local supermarket. Well, everyone, the town you were here. So one of the shopkeepers and sitting down and getting him a milkshake.
And you know, when the ad came out a little bit fraught, I’ve always been someone just saying, no, he’s either. He’s fine. So the whole town knew and loved rhythm. When we came back to Brisbane, it was very similar except. There were problems with mainstream schooling. Their view was less personal. He was less well known than the children weren’t as kind as they were out there.
So he didn’t last long in mainstream schooling. Before we then look at special schooling at the same time, the wider family was just wonderful with brilliant Leanne’s. Dad taught William how to ride a bicycle. I would never have predicted that reel could have written a bicycle. The granddad stock added stock added stock added stock had.
So what a wonderful grandfather, he has been over all these years. And you know, if you’re talking about father figures for me, what a wonderful. That he is, to me, he’s, he’s still alive. So there were so many interests within the family and those interests became Williams’ interests and William became involved in the church and they loved him as well.
So you can see how all of these, these things come to bail. Yeah. So when we better down, down on the diagnosis, yes, I was interested in the diagnosis and I was fascinated to read about it, but in one sense, I mean William’s fight was already determined without, so in that sense, it made no difference
David Hirsch: while our, it seems like a, you couldn’t connect those dots looking forward, but you can look back now and see.
How important it was to be growing up in a small rural community initially just from a safety and being supported in so many different ways, not only your family, but the community and the church, getting behind him and making that transition back to the big city, the big
Shane Sondergeld: city, um, that
David Hirsch: must’ve been that must have required some adjustment.
Shane Sondergeld: It did require adjustment. But remember David, when we came back to the big city from Texas, it wasn’t because of William. It was because of George. Now you may recall that I had to leave Texas and spend a year away from my family and that affected my relationships more broadly within the family. And I didn’t have some of those guiding influences that I think adolescents really need.
Now financially I was on a really good wicked app here, um, because the government wanted people desperately to go to rural areas in Australia. So we would have our house provider with all its rates, centricity and water, but I’d have a surgery provided, I’d have a separate income from the hospital. I was doing really very well financially setting myself up for the rest.
But yeah, George then gets to the age where he’s ready to go to high school. And for me, family is everything. And so it was not a decision that really even took much melanoma. We decided this was the time that we would move as a family back to Brisbane. So that gave her the opportunity to be with all of my children and they Leanne and I to be with all of our children, as they were growing up to witness their highs, witness their lows.
Be there to respond to how they were trying to deal with those sorts of things. If they had decisions to make, we can have input into those to shape their values. It was a wonderful thing, I think, to just stay with the family and to come back. But we all, yeah, it was challenging when he came back because school didn’t work out, but for the other two, it was the best thing they could have done.
They achieved very highly in each of these schools and you’re going on to achieve very highly in university and in general life, William fell on his feet when he got to special school though. Um, David that made all the difference, getting him out of mainstream education. So a very important transition for him.
David Hirsch: Yeah. Well, I think another important point is that, uh, a family who’s raising a number of children in one or more children with special needs is a balancing act, right? You want to do what’s in the best interest of your child. With special needs, but not to the disadvantage of your other children. And I heard that’s what I heard you talking about.
And I also heard you saying that you, you were ahead financially because of the demand for doctors in rural areas. So you are getting ahead financially, but perhaps at the sacrifice of your family,
Shane Sondergeld: Well, the family loved being out there and I think they really enjoy going to school and the friends at night.
So he wasn’t so much. I think that we were trying to, that the family would be sacrificed that there he would have been had we not moved back to Brisbane? I think that’s when they would have been sacrificed. So I think we pulled the rock fevers.
David Hirsch: Excellent.
Shane Sondergeld: So.
David Hirsch: Not to focus on the negative, but I’m wondering if there were some challenges.
What would you consider some of the more significant challenges you faced as a family and in particular with Will’s situation?
Shane Sondergeld: I think it was more challenging when William was suffering epileptic seizures. Okay. So you recall that reset the scene, Rebecca out in Texas homeworking, horrendously long hours for days and days on him.
So, um, the end would have a lot of the caricature, um, uh, being with the children and therefore William had a seizure that was, of course very, would be very confronting for her. She would then either try and. Get him to the hospital or get the ambulance to take him to the hospital. Cause we do have an ambulance there.
And then of course it was over to me. So this is my son. Now he was actually having a fit and I have to establish venous access and to treat his sesions. But that’s what you do. I mean, you’re a rural doctor bag and so. I was used to trading my friends. I was used to having a trick family members. I mean, there are William playing cricket out there.
I want a patient cup too close to Louis and he swung the bat and clocking the head. So spit opening his eyebrow. So. I had to repair that. And that’s a challenging thing to date about development. If you don’t get an eyebrow repair right there, you end up for the rest of your life, having one body Adria a bit harder, allow them the other part of your argument.
That’s not a good look. So they’re all willing to hit to get his eyebrow fixed up. So I did that. He came off his body once and got more cuts and they haven’t been suited as well. So they’re all Willy. He just had his moments in LA as he was growing up. But, you know, he was treated like any other child.
Our children were just so patient, mostly having a spectrum, but they really were, and they just understood it. We had to give some time to will, but when it came to giving time to them, we never stinted there either. So it was just a joy to give until that.
David Hirsch: So I’m wondering what impact world situations had on George movies or the rest of your family for that matter?
Shane Sondergeld: Hmm, interesting. Whenever, because they both held leadership positions in school, that it was always interesting to me when they were giving speeches on leadership or Mmm. They would refer sometimes to their own situation or their relationship with their brother, or indeed, because they both work extensively with children with disabilities as they were coming from school and volunteer process.
How this just enriched their life and their thinking. What I mean by that is that I remember one speaks in the weeks ago about success. The notion of success confronting the girls at her school about, uh, we’re gonna, for us, it might be achieving Holly and subject or getting into this course of university or making this particular team in sport, but she just come away from it.
The volunteering and what’s for the Sony camp for the disabled and their success was for a child to be able to be helped from her wheelchair and to be able to stay in for two seconds before. But since it is such a relative and subjective thing, and so they have thought very deeply about their lives and in, so doing, um, have shaped the values and have shaped the values of others.
So having a child with a disability. He’s, he’s not a negative. Um, there was just so much wonder to be saying if you can, if you just go looking for it.
David Hirsch: Yeah. Well, it sounds like a has to do with, how do you define success? You know, it’s not necessarily a monetary thing or a position or title, and I’m wondering what George and Luis are doing today.
Shane Sondergeld: Well, well, George studied pharmacy at university, and then when he graduated, um, became involved in a specific area of Emerson pharmacy called compounding. For those of your listeners who might not be familiar with that, David, you might be aware that if you are on a medication, you’re walking, go to your pharmacist and you’ll take the prescription off the shelf that we’re going to pack it up, whatever it may well be.
And this has already been produced in this. Manufactured on mass satisfactory, but there are so medications which don’t have wide clinical application. If you give it in a tablet, for instance, I know that you have relatively new grandchild. What of that grandchild had site refunds and requires some medication to control that reflex, but a baby of course can take a tablet.
It’s not, you might not have stability of the medication if you crush it in honey. So a compounding pharmacist. Well, wherever the basic ingredients can make up whatever it is that you need. Now that could be mainstream medications. It might be in work with them, children with special needs again, and it might be with special dots and vitamin preparations.
So he’s gone very well with compound Louisa. He’s just completing his third year as a medical student. And she’s already showing an interest in rural medicine in general. Wow.
David Hirsch: I have accomplished a lot at a young age. So I’m thinking about supporting organizations, um, you and your family have relied on, um, either institutionally or just individuals, for example, I think you mentioned that Will’s granddad taught him how to ride a bike.
And I’m wondering if there’s any others that have quite an influential role in world’s development.
Shane Sondergeld: Very much. So yes, granddad to ride a bike. Granddad loves to go camping. So William and the other children, don’t camping with granddad. Um, there’s a little beach house. Now about an hour South of Brisbane and granddad, and we’ll, we’ll often go down there and spend a few days together, granddad, or we say he would talk the leg off an iron pot.
So he loves to go out and have a chat to his friends. And so will has learned this, um, this gregarious, this from Brendan climber. In other words, the ends mother, grandma is a very steadfast person. She loves to be part of organizing will and. Extending his boundaries, little by little. So she gardens with him.
He lends the guitar. So grandma, every Monday we’ll come around and pick him up and take you his guitar. Listen, come back. So everyone and the family has their own little interest. Yeah. Takes care of most of William’s decisions day by day. The same thing. We have a very big cricket match in Brisbane.
Australia is taking on Sri Lanka in what’s called a limited overs game. So it’s, it’s very much like in one sense, a baseball game diamond, because it’s gotta to be over with, within a few hours. And it’s all about big hitting. So will, and I going to go to that, we go to a lot of sporting events together and he helps me a lot around the house.
We do things together in terms of that he absolutely loves George and Louisa. Um, I was sitting with him last night and the ticks came through from George, but just said, love your mate. So, I mean, there are all of these things that just go on almost imperceptibly in his life. He is so supported and so loved.
He’s just a very, very lucky boy.
David Hirsch: Yeah. Well, that’s wonderful. Thank you again for sharing. And I’m wondering what role spirituality has played in your lives?
Shane Sondergeld: I cannot remember a time and when I did not know a spiritual presence in my life, And I cannot remember a time when I wasn’t going to church.
Leanne’s dead. Doesn’t attend church frequently, but mum does. And so the end, always to the church and went to Sunday school and youth group, as I described before, as we now journey through life, we still go to church together. We still take William to church. George doesn’t the team’s church. Frequently Louisa is in Sydney studying medicine, and she’s actually at a Catholic college there.
That’s where she stays. And so she goes to mass every week, even though we are, we can, I think that’s wonderful because when I go to church and I hear the scriptures read and I hear the preaching, I’m, I’m looking to be with like minded people. So I want that fellowship, but I’m also looking for. A resignation between what’s being said and where my life is heading and what I need to think about the directions I need to pursue and charging my batteries for the next week.
So to answer your question, that’s central to my life and it’s important in my life. And I couldn’t see my life without gardens.
David Hirsch: Well, thank you for sharing. I think it was evident from our conversation, but I just thought I’d ask, just to be clear. So I’m thinking about advice now, and I’m wondering what some of the more important takeaways are that come to mind.
One raising a child with differences.
Shane Sondergeld: Well, you must remember that this is in the context of having a very supportive and loving wife and mother, her wider family and a wider community and a school situation, mostly that was also prepared to have input. So that’s my context, and I’m very, very fortunate for that.
But if I divorce myself from that, what’s the takeaway message for me. Yeah, not just with him have been loved, have been respected, have been included in everything that raise a family do, but they have always had limits. And I believe that’s very important that children need to know what is right and what is wrong.
They need to have a perception and understanding of what’s important to their parents and what their, their print organs. Huh, and that’s a learning experience for me. And as we all grow through life, if you could apply that with love, I think together now I look back on times when, and it could, you know, try the patience of a Saint.
And I was no Saint David. I was working, having tough times. I was less than patient with him and, you know, a bit snappy and I regret that. But I look back on the times that I would always come in now, when he was ready to go to bed, you know, it’d be there with you. And I talk to him, I’ll tell you how much I love him.
I’d read to him how it makes sure that we would always sit around a table at dinner, time to talk about the day, not sit in front of TV. I just think there are values you can bring to the relationship, but the most important one is love without all of this. Yeah. Planning
David Hirsch: Well well-spoken thank you. Um, I’m curious to know why is it that you’ve agreed to be a mentor father as part of the Special Fathers Network?
Shane Sondergeld: Oh, that’s simple. David. I think I’ve got something to give. And why is that? Well, life has taught me that enabled me to give my circumstances, allow me to give them my God has allowed me to give.
And, um, that’s why we here on earth, essentially. My belief is to, um, to allow them to be loved. So I think if any of us have an opportunity to look outward, to help in that way to give, and that’s what it’s about. So it would be my pleasure to be part of your mentoring.
David Hirsch: Well, thank you, Marie. We’re thrilled to have you, so I’m wondering if there’s anything else you’d like to say before we wrap up.
Shane Sondergeld: No doubt have probably enjoyed where you’ve shepherded me and I’ve enjoyed having a chat between two friends.
David Hirsch: Well, thank you again. If somebody wants to contact you, what would be the best way about going about doing that?
Shane Sondergeld: Email is always the best way Dr. Shane won the, uh, his page, a numeral one. That is in North Texas.
David Hirsch: Well, Shane, thank you for taking the time to many insights. As a reminder, Shane is just one of the dads who has agreed to be a mentor father as part of this Special Fathers Network, a mentoring program for fathers raising a child with special needs. If you’d like to be a mentor of father or are seeking advice from our mentor father with a similar situation to your own, please go to 21stcenturydads.org.
Thank you for listening to the latest episode of the special fathers network data dad podcast. I hope you enjoyed the conversation as much as I did, as you probably know. The 21st Century Dads Foundation is a 501 c3, not for profit organization, which means we need your help to keep our content free.
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Shane, thanks again.
Tom Couch: It’s been my pleasure. Thank you for listening to the dad to dad podcast presented by the special fathers network. The Special Fathers Network is a dad to dad mentoring program for fathers raising children with special needs through our personalized matching process. New fathers with special needs children connect with mentor fathers in a similar situation.
It’s a great way for fathers to support fathers. Go to 21stcenturydads.org. That’s 21stcenturydads.org
David Hirsch: And if your 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.
Shane Sondergeld: If you enjoyed this podcast, please be sure to like us on Facebook.
And subscribe on iTunes or wherever you listen. The dad to dad podcast is produced by Couch Audio for the Special Fathers Network . Thanks for listening.