“What does it mean to ‘Man Up’? It actually means to stand down, take a good look at the situation, and stand from a platform of humbleness. Stand from a platform where strength comes from saying, I actually don't know it all. Maybe I had to have a special needs daughter to understand all of that.” —Damas Manderson In this fifth episode of Wisdom Shared, we hear from a New Zealand father, husband and entrepreneur who gave up his career, country, and everything he knew for the opportunity to help his daughter and sustain his family. Damas Manderson’s daughter, now 17, was diagnosed at an early age with Cri du Chat (also known as 5p- syndrome), a rare genetic disorder. In this interview, Damas opens up about what he has learned while raising Kennedy Rose, whose condition includes a range of developmental challenges including autism, severe ADHD, aggressive behavior, lax ligaments, seizures, heart issues, and the possibility of sudden death. Damas describes his journey with conventional and unconventional therapies, navigating well-intended advice, religion and spirituality, and the power of vulnerability and kindness. His story is one of perseverance, hope, compassion, and love. All parents, healthcare professionals and teachers can learn from this father who shares his wisdom so generously.
FOR MORE INFORMATION:
The 5P- Society (Cri du Chat)
https://fivepminus.org/
Cri du Chat Society Facebook Page
https://www.facebook.com/CriDuChatSociety
National Organization for Rare Disorders
https://rarediseases.org/rare-diseases/cri-du-chat-syndrome
NOTABLE QUOTES FROM THIS EPISODE:
You are welcome you to share the wisdom from this episode. Please be sure to credit: “Ep. 5, Damas Manderson, Courtesy of Wisdom Shared Podcast with Carole Blueweiss.”
22:30 “When you’re hurt, you hurt others”
30:59 “If empathy was the first point of reference for people, that would go a long way”
39:07 - “A handful of special needs parents can fall into the category of where the normal children become caregivers whether they want it or not.”
44:00: “What does it cost me? It’s only cost me money. What have I gained? A loving wholesome family, with a value that we will carry forever. My family is my legacy.”
50:00 “There’s not an instruction book for how to be an effective special needs mother and father or husband and wife.”
51: “Kindness doesn’t mean weakness. Kindness means strength.”
EDITOR’S NOTE:
Damas and Dina Manderson intend to start a foundation for their daughter, Kennedy Rose. These episode notes will be updated to include foundation information when it is available. (1/9/2021)
[00:00:00] Carole Blueweiss: Welcome to Wisdom Shared, where parents are the experts.
[00:00:08] Damas Manderson: Just because a doctor tells you that your daughter is gonna be this for the rest of her life, we are too easy to accept that narrative and bow down to it. And I'm just so thankful that Dina and I said no. We are gonna take an intentional, deliberate, rational look at every option available to us.
[00:00:36] Carole Blueweiss: My name is Carole Blueweiss. And my special guest today on this fifth episode of Wisdom Shared is Damas Manderson, the father of Miles and Kennedy Rose. Kennedy Rose was born with a genetic syndrome called Cri du Chat, which translates to cry of the cat. I admit that I was taken by surprise that a man who I had only met once briefly before would speak to me so candidly on Zoom from inside his parked car so that he could have the quiet he needed without interruption.
[00:01:08] I am so grateful for Damas's wisdom. Damas shares so openly and deeply about his life with his special daughter, Kennedy Rose, including victories, courageous parenting of his neurotypical son, sacrifices, challenges, and a struggle with depression.
[00:01:29] I came to realize that Damas spoke so sincerely with me because he believes openness comes from his belief that it's through connection and communication, even when and in spite of not having answers, that challenges can be more easily overcome.
[00:01:45] Damas Manderson: I feel very lonely. Sometimes, I have men that I talk to and they just wanna look at me and say, gee, harden up, man. No. That's a problem to say that. I think men need to be more vulnerable. There's power and strength in a man when he's vulnerable. And I've had to learn that myself. This 'she'll be alright mate', or, you know, 'hey, harden up. Just move on. Get on with it.' The evidence of that shows it doesn't work. It creates distance, not togetherness. So maybe I had to have a special needs daughter to understand all of that.
[00:02:22] Carole Blueweiss: His power of self-reflection, willingness to think outside of the box, to listen to his inner voice and -allow himself to feel vulnerable, go a long way to building resilience. When Damas and his wife Dina learned that Kennedy Rose would need special care, Damas put his thriving property development consultancy business on hold, researched American cities where he knew Kennedy Rose would get the best treatments and services. And when the gem of a clinic was found to be in a small Indiana suburb, his instinct proved him right. Kennedy Rose is beating the odds of her original prognosis.
[00:03:01] Damas Manderson: There's not an instruction book to know how to be an effective, special needs mother and father or a husband and wife.
[00:03:09] Carole Blueweiss: How did you meet your wife?
[00:03:11] Damas Manderson: I met Dina in 1995, and I didn't think I'd end up, you know, getting attracted to an American lady. I thought, you know, that's complicated, having an international relationship. But, you know, she pulled my heartstrings and so I asked her to come back to New Zealand with me to see if we were more than just a summer thing. And we ended up eloping about eight weeks later. And then we had the traditional church wedding a year later back in the States, back in LaPorte, Indiana. And then, you know, back to New Zealand and got on with my business and our life.
[00:03:44] And to cut a long story short, Kennedy Rose was born in 2003. And when we had the diagnosis that she had a rare syndrome and she was one of eight people in New Zealand at the time, I tried to look at private care for her. To private ways to, you know, to try and maximize her development, but it just wasn't working out.
[00:04:02] And so being married to an American lady, it gave us the privilege of looking at America for medical treatments. So at six weeks old, we're on the plane. I was already doing a summer camp program there, so we did that together as a family with my 4-year-old son, Miles. And so yeah, we looked and then we just got busy at the same time looking for care and we looked at California and it didn't seem to have anything right at an early age. And Virginia, where that's the camp I was doing, that there wasn't a very good program there either for such a young age.
[00:04:36] LaPorte, Indiana, of all places, which I did not wanna live. I like mountains and sea and all that stuff, you know, versus corn fields and soybean fields. There was a program that immediately was able to tap into her speech therapy, occupational therapy, you know, physical therapy, developmental therapy, geneticist. I mean, it had everything. And I was shocked.
[00:04:59] I'm like a little dinky farm town has all this? Boy. Yeah. That was the beginning of what I thought would be one, you know, maybe 12 months. So that's where we ended up 10 years later. And a lot of trials and tribulations. But I was, I'm so thankful that they just kicked in and started doing everything they could.
[00:05:22] That really was the beginning of following my nose and trying to live in another country, even though we speak the same language, you know, a couple of cultural differences. Missing my environment of, you know, my business world. And everything I knew about that was all in New Zealand. So it was really-
[00:05:41] Carole Blueweiss: Your family, they're New Zealand?
[00:05:43] Damas Manderson: Oh, yeah, yeah, yeah. My family and, you know, everything. My family, my friends, everything. My relationships and networks were all solid in New Zealand. They were important, but not as important as my daughter's wellbeing and her health, you know? So I just put my business on hold and played it one day at a time. Yeah. Thank God for America.
[00:06:03] Carole Blueweiss: How did you do the research to find this amazing little microcosm?
[00:06:08] Damas Manderson: You know, I'm a praying man, so I put a lot of power in prayer to lead me to the places to research, and I really just followed my nose. I mean, I started researching the cellular level of a body and what does it take to give the cells what they need to help the body to heal itself. You know, and what can we do to facilitate it? What are the other aspects that we can apply to give this precious soul the best life possible? And then the research led from that also to the earlier the intervention, is what the research said, the better chances that you can maximize development.
[00:06:51] Not change the syndrome, there's nothing there to try and change a gene disorder or deletion. But all the research indicated now, now, now. The earlier you can, the better your chances you have are hoping to get a desired response. Even if it's not the response we're looking for, it's gonna be a better response than doing nothing. And that's when it led to all the therapies that I mentioned before.
[00:07:13] And that really was the critical part of just activating her body to sort of wake up at every level, if I can use the word wake up. And, yeah. That and the geneticists. Well, even they, as rare as the syndrome is, they knew enough. But not enough to specifically apply.
[00:07:30] A pediatrician doctor in La Porte who actually had transferred over from New York. He had seen a handful of Cri du Chat syndrome children, I think about 10, maybe 10 in his time. And that was considered a lot just in his world. So, he came with knowledge, and his knowledge was really, I know enough to be dangerous. But not enough to be absolutely effective. And I appreciated his honesty. But he says, you know, this is gonna be trial and error as far as medication and how we, you know, to deal with the autistic spectrum in a syndrome.
[00:08:05] The ADD, the ADHD, the aggressive behavior, you know, her lax ligaments, low muscle tone. It was really trying to find a combination to curve her behavior, to make sure that the medication didn't take away so that her lax ligaments and lower muscle tone, it would stay that way. So you had to be careful.
[00:08:24] Some of the medications they gave, it had a sedating effect, but would that sedation actually work against PT and OT and all the other Ts. So yeah, it really was, there was, there's no instruction book like you would have for Down syndrome or other syndromes that are more common, to know how to apply. So the research led us to, it's all trial and error, but activate all the functions in the medical world as much as possible because one or all or some are gonna have a positive effect on her.
[00:08:56] And so we had to really open our minds up and just trust, you know, trust that what we were doing was proactive versus reactive. And I think that's the message that we got from our research is to be proactive about this. Not wait till something bad happens and then be reactive. And so we were just, I suppose, just trying to get ahead of the curve the whole time.
[00:09:18] Carole Blueweiss: When you said that you found this place in La Porte, Indiana. They had all those resources. Were they specifically for genetic syndromes or they generally for children who have disabilities?
[00:09:31] Damas Manderson: Generally for children with disabilities. So it was not specific to her syndrome. In fact, our therapist, it was the first time that they'd actually dealt with this syndrome. But it didn't stop them from doing their own research in their own departments, in their own sphere of influence and skill set. It didn't stop them from researching how they could be the best version of themselves in their specialized field.
[00:09:56] We had amazing therapists that were so committed, they weren't just doing a job, they were doing their best, you know, professionally and personally, to do what they can and could for Kennedy Rose.
[00:10:10] Carole Blueweiss: And how old was Kennedy Rose at that time?
[00:10:12] Damas Manderson: Six weeks when we moved over here. And I think she was about 12 weeks when we started the program.
[00:10:18] Carole Blueweiss: Tell me about the syndrome that Kennedy Rose has.
[00:10:22] Damas Manderson: Okay, so it's called 5p- syndrome and it's also called Cri du Chat syndrome, which is French for cry of the cat. And why they call it cry of the cat is because one of the first symptoms that they pick up is they cry like kittens when they're born because of the lax ligaments and low muscle tone means they also have an underdeveloped larynx, the voice box.
[00:10:43] And so it was so cute, which is, oh, how cute. She cries like a kitten. And also, they actually can have cat-like features on their face, which is quite bizarre. It was actually our midwife that picked up the cry and had recognized that and that's what sparked them to do the genetic test.
[00:11:03] And so she happened to be in the part of the deletion that is severe. So you can have that from ranging from mild, which means they cry like kittens and they might have mild mental delay, all the way through to severe deletion, which they can be in the severe range, which severe means they won't walk, they won't talk. They have autistic spectrum, ADD, ADHD, aggressive behavior, possibly tube fed, heart issues, seizures, and the severe range adult mentality of a three to four year old child. And in some cases that's been documented, spontaneous death.
[00:11:44] Now in New Zealand, out of the eight that were born, four of them had died in their childhood and I didn't like the odds. That was devastating when we got all the, what could potentially possibly happen to Kennedy Rose, The one that blew me away the most and just put me into like trauma mode was spontaneous death. I'm like, how do you measure that? How can you measure spontaneous death? That rocked my world then, and it still rocks my world today, and we are 17 years into this, going on 18 years.
[00:12:14] Fortunately, Kennedy Rose was in the severe range, is in the severe range, and they did mosaic testing as well. She didn't have the mosaic. That was the diagnosis and we walked out of the doctor's office, not knowing what to do, what to think or how to go about it.
[00:12:33] Carole Blueweiss: When you say she didn't have the mosaic, what does that mean?
[00:12:37] Damas Manderson: It just means in the genetics, it just gives you a better chance of hopefully getting maybe a bit more mental and physical bonus in the mix. That's the simplest way I can describe it.
[00:12:48] Carole Blueweiss: And she didn't have that. What can she do? What is she like?
[00:12:52] Damas Manderson: She is currently floating between three and four years of age. She is walking and she can run. But with her lax ligaments, she loses her balance quite quickly, and if it's a rough surface, she tends to lose her balance and fall over. But it's a great victory from the fact that she really should be in a wheelchair. And if you compare her to the other children that have the same deletion as her, they're in wheelchairs. They are tube fed.
[00:13:19] And they ask us, you know, what have we done differently? And I'll get to that point later, but right now, as far as her, what she can do, she can talk, but you have to listen because of the underdeveloped larynx. Some words can come out clear. Other ones, you have to try and piece it together.
[00:13:35] So she speaks English real well, but it sort of has to also learn to translate her language, you know. Because of her underdeveloped larynx. So she can tend to get frustrated and we can too. Because she's trying to say something and we're not picking up on the word. She does do sign language. I refused to learn sign language because I believed that she would talk one day and, you know, my wife and my son learned the sign language and I didn't. I learned the basic ones.
[00:14:04] I just wanted to believe that she would communicate with us through speaking. There's a fine line between being, having a faith to think that'll happen or being foolish and just being a dreamer. I know I was walking that line, but I chose to do that. And thankfully she communicates well enough to, you know, to hold a conversation of some sort.
[00:14:24] And she surprises us even to this day of new words that she can come up with. So she's gonna be the brightest 3-to-4-year-old that we've ever had. She's not just gonna be a 3-year-old for one year, you know, she's gonna really max out what a 3-year-old can do. But no, she can, and, you know, we're just trying to teach her to ride on a special needs tricycle right now. You have to strap her in. I mean, hold her balance in. She's starting to draw. She's starting to do her own artistry and it's typical of a 3-year-old, but that's great. She'll scroll through pages in a book, and even though she doesn't know the words, she's been creative enough to make up her own stories.
[00:15:00] Carole Blueweiss: Wow.
[00:15:01] Damas Manderson: She loves dogs, so she knows just about every breed there is of a dog. She just goes through YouTube and we, you know, we set her up with, so she's eager to learn and that's wonderful. She's really eager. She just wants to learn and that's just a joy to us. And of course, you know, they say the terrible twos and the terrible threes, we got that too, you know?
[00:15:23] Carole Blueweiss: Sure.
[00:15:23] Damas Manderson: Sometimes I call it Groundhog Day, you know, we're just living Groundhog Day and that's okay. We've learned to appreciate the rays of sunshine in the day, you know, otherwise it can take you down pretty quickly.
[00:15:37] Carole Blueweiss: You've described that developmental level. She's between three and four years old. Can you describe Kennedy Rose physically?
[00:15:45] Damas Manderson: She has brown, straight hair. She is about five foot four right now. You know, she definitely has a 17-year-old body going onto an 18-year-old body. So as far as developing physically, she's got, you know, she's developing like a teenager.
[00:16:05] She's just recently in the last 12 months has her cycles every month, which has been a new development for us to try and, you know, because she understands the mechanisms, but she doesn't understand any, you know, the other part of that. She is still in diapers. And we are still potty training her. We've been potty training her for years. She can partially clothe herself, but not fully.
[00:16:29] So she's literally 24/7. So even though she has a certain amount of independence, she can walk and sort of run a little bit and do her own things, she hasn't got the fine motor skills to, you know, like put her socks on properly and tie shoelaces, but she can, she has figured out to put on her own pants and stuff.
[00:16:48] She's 90% there of knowing how to put her own diaper on properly. She knows how to take herself to the bathroom now because she didn't know at that. She's now in recognizing the indicators of when she needs to go and go to the toilet and she can put her diapers on. We've taught her to shower herself, but we still have to help her, you know, clean up and dry up to put her clothes on. That's just something that we hope that the repetition will help her maybe do it herself one day.
[00:17:16] Carole Blueweiss: Who helps her 24/7? I imagine that there's only so much you and your wife can do.
[00:17:21] Damas Manderson: Well, you're right. It is only so much, so that's where Dina and I have been a hundred percent together on this, and I've actually given up my business and once upon a time I had a thriving business and was doing quite well financially, and I've been in the property business, so I had my own investments. I was doing property development, property consultancy. I started off doing flips and just organically progressed from there. So I put all of that on hold and actually started selling off my investments to support Dina, to make sure that our marriage stayed as healthy as we could keep it. Because, you know, 80 to 90% of special needs families get so stressed that it ends up in separation and divorce.
[00:18:14] You know, they just drift apart. I get that. I totally understand. I mean, marriages are hard work anyway. You know, it's, they're not easy. And so, when I looked at that and the different scenarios, I was thankful that I had the financial resources to actually just take a sabbatical. I didn't realize a sabbatical would be the primary aspect.
[00:18:36] I mean, I'm not in that position now. I actually, I've actually just started a job and it's been really weird being an entrepreneur that going and working for someone else, but you gotta do what you gotta do. Because I've actually over the years have used up my retirement and my investments, you know, to make sure that we didn't get overtaxed and overstressed.
[00:18:56] The irony of it is we are overtaxed and overstressed, but not in a bad way, if that makes sense. So now Dina and I have been a hundred percent together on this, and then we also have caregivers that come in and give us about 25 hours a week. I would love at least triple that, but that's enough just to give Dina and I a little bit of decompression time.
[00:19:17] And we are very thankful for whatever care we can get. We're actually working on trying to increase those hours now and give us a bit more time for Dina and I for more self care. Stress can lead to health challenges and I know both Dina and myself have had some pretty serious health challenges that have come up in the last couple of years that we've realized that if we don't put more care into ourselves, then who's gonna take care of Kennedy Rose if something drastic happens to us? So that's been a reality check as well. Our family has at the beginning, wanted to help us and be there for us.
[00:19:50] But I mean, we turn over caregivers a lot, because she, Kennedy Rose, can burn you out. She's high energy. She's high, high, high energy. It's like ADHD on steroids. And then with the autism aspect of it, you just don't know from one day to the next whether she's gonna be calm or she's just gonna lose it kind of thing.
[00:20:11] And so we, you know, we're adrenaline dumping all the time. Dina and I, I think, you know, we've just got constant cortisol drip going and we know we're addressing that now to make sure that we can be in the long haul with Kennedy. Because as far as putting her into a home, that's just not something that we have entertained.
[00:20:28] You know, we are working through these things right now as what is the next season in our life that allows us to be the best version of ourselves and truly be there for Kennedy. And not just being in survival mode, but being in thriving mode. So yeah, we are definitely at a massive transition right now.
[00:20:45] Carole Blueweiss: What are some of the things you've come to with your marriage? Like there are people out there, like you said, or I'm sure struggling, whether they have children with special needs or not, but in particular, the stress is unbelievable on the marriage. How did you and Dina manage that, or how do you manage that?
[00:21:02] Damas Manderson: Oh man. That's a good question. How do we manage? By God's grace alone. I mean, there's no judgment with Dina and I as when it comes to relationships, and we totally get why people just bail. We get it. You know, I mean, the times that Dina and I have hit a crossroads and to say that we haven't been through that, we have. We've hit our points and like, throw your hands up.
[00:21:29] You know, we've turned on, Dina and I have turned on each other. The stress gets so high, it's just like it's easy to point the finger. We've both done that to each other. But I suppose the fact that we have a common faith and a common belief, even that's been challenged. But it was enough to just give us a foundation to go, let's just step back a little bit. A lot of who I am is because of who she is and we've stuck with each other, but she has stuck with me to help me recognize who I am as a man, and I gotta give a lot of credit to her. And, you know, 'cause you know when you're hurt, you hurt others and you don't mean to, but you do.
[00:22:11] And to even just sit down and acknowledge that with each other and say, I'm really hurting right now. I don't have the answer for anything. And I'm sorry. You know, it's those words just to humble yourself and say, I think I'm wrong in this. You know, it's just, there's such powerful words to actually just equalize the situation out.
[00:22:33] Carole Blueweiss: It sounds like you've learned a lot from your wife.
[00:22:37] Damas Manderson: Oh, heaps. Heaps from my wife. She's a rockstar, my wife. She is the most amazing woman to be journeying this with. She has an amazing strength and she has an amazing endurance and an amazing will to fight the good fight. And no matter how much credit I give her, it'll never be enough.
[00:23:02] Carole Blueweiss: Did you come to that yourself or is that through therapy or religion or?
[00:23:06] Damas Manderson: Well, we, Dina and I both have the same faith. I wouldn't say that religion has helped us. In some ways, I think religion can actually do more damage than good. We definitely, and I don't wanna speak against religion, but you know, Dina and I, we, you know, we believe in Jesus and we believe in God.
[00:23:29] But today, if someone asked us if we were Christians, I would actually turn around and say, well, I would like to know your definition of a Christian, 'cause there's Christians and there's Christians and there's Christians. And so I prefer to say that we are followers of Jesus, the unadulterated Jesus. Why I say religion hasn't helped us because obviously sometimes religious institutions can do more damage than good in, in the name of God. So I'm very sensitive to that as well.
[00:23:58] So I suppose Dina and I would be ones that are truly understand the spirit of Jesus and what he stood for and what he stands for, which is love and acceptance and grace and mercy, forgiveness, and relationship building. Because I will say we've found some beautiful friends within the faith that just love us.
[00:24:23] But we've had some friends that have turned on us in the same faith. We've had friends that have tried to tell us all sorts of, I could write a book on the different theories that have come out. And when there's been people that have, you know, they say you, if you walk a mile in someone else's shoes, you have a better off idea what they go through.
[00:24:44] And we've noticed that sometimes people are easier to just give you their advice with nothing they know about. And so we've learned to just say thank you and move on.
[00:24:57] Carole Blueweiss: Just to give people a reality check, for those teachers out there and healthcare workers and just parents that don't have children with special needs, what are the kind of things you come up with, with other people that maybe are ignorant or just don't understand?
[00:25:10] Damas Manderson: We do find a lot of ignorance out there, but I don't mean ignorant in a bad sense. Ignorance as in they simply don't know. And sometimes ignorance can come in different shapes and forms where they actually think that they're trying to help us and we'll take that. We'll take if they think they're helping us, even if it's not, it's being counterproductive.
[00:25:28] What would an example of that be like? We get people wanting to help, you know, wanting us to be inclusive. And that's wonderful. We have friends that 'come on over, come and bring Kennedy Rose' and we did that at first. And then Kennedy Rose just gets triggered by sensory overload for something in the house.
[00:25:47] And we, it's random, whatever it is. And then, you know, the people wanna be nice. 'Oh, it's okay, don't worry about it. It's all good.' That's one example. And then they'll keep saying that until Kennedy, until I actually literally have to physically remove Kennedy from their home. And at that point, everyone's trying to be nice. But you can actually see sometimes the uncomfortableness with them. They just don't know how to handle it. So the dynamics change very quickly. Not that they want to be mean or horrible 'cause they're not. It's just like, yeah, they think they're being nice and they are. They're being nice in the way that they know how to be nice, but they're so uncomfortable when Kennedy Rose has an autistic meltdown, 'cause that's part of the syndrome.
[00:26:33] You just see they get uncomfortable and they don't know how to handle it. And then if they have their children around, it's almost like in some cases, how can I protect my son or my daughter from witnessing what could be traumatic for them? Because Kennedy Rose is literally just losing it, you know?
[00:26:50] And, you know, wrenching and throwing her head back on the ground. And we're trying to stop her from cracking her head on the ground, and she's just squirming. In the end, sometimes our friends won't invite us back because they don't know how to handle it, you know, and that's fine. We get that now. So you tend to deal with a lot of rejection. And then, oh boy, I could go on.
[00:27:13] It's just, you know, when you're going to places of fellowship when you wanna just hang out with other people at an event, that's when you get friends who are like, they're gracious. They're like, yeah, it's okay. We get, I get other ones. It's like, excuse me. You are really, you are disturbing our vibe right now.
[00:27:30] And it's not like you're gonna get that in their words, but you see in the body language, you see it in the eyes. You see, and then that just flows on. That just goes over. It becomes to the point that when, now when Dina and I want to go somewhere, we actually get a caregiver to look after Kennedy Rose because we just don't want to deal with the looks or the body language or the comments. Or they're being bad parents, you know, or they don't know what they're doing or just it's, and that's the part that winds me up.
[00:28:03] And so in order not to get wound up, it's just easier to, for Dina and I to, you know, go places now if we can. It doesn't happen much, but if we get away, we make the most of it because people truly don't understand. I think ignorance is an abundance, and especially with a rare syndrome, sometimes the comments that people want to say to try and comfort us aren't comforting at all.
[00:28:26] Carole Blueweiss: Like, what? I could be one of those people, I would want to know what is something that you're talking about? So I cannot be ignorant.
[00:28:36] Damas Manderson: Mm. Okay. Someone wants to comfort us, the best thing they can say is, we have no idea what you and Dina are going through, and we would like to help you, but we don't know how. But we are willing for you to show us how we can help. If we can help. Even just to, even just for a person to say that to us would be like, wow, you get us, you get. You know, you're actually showing that you care enough to say, show me, teach me, and I'll let you know if I can or I can't.
[00:29:19] And that would be so nice just to be vulnerable with us. Just to be vulnerable with us, and that takes ignorance out and it opens up a conversation. Even if they can't help, it's comforting to know that they don't know and they don't have the answers, but they're willing to journey with us. That is comfort.
[00:29:43] Carole Blueweiss: Yeah.
[00:29:43] Damas Manderson: For our situation, yeah, that is comfort for us. It may never turn into anything, but that's something.
[00:29:51] Carole Blueweiss: A lot of people wanna give answers, even if they don't have answers, right? Sometimes it's better just to be vulnerable.
[00:29:58] Damas Manderson: Be vulnerable.
[00:30:00] Carole Blueweiss: So people instead of that, they're saying, they're either judging or they're trying to pretend they're not uncomfortable, but you know they are. Or they are uncomfortable and just are. Are those the three basic?
[00:30:14] Damas Manderson: That's the three basics. Pretend that it doesn't exist or just be around you and they get uncomfortable or they just want to criticize and judge you. Yeah, those are pretty much the three categories. And we live in a world, in a society, where people are very quick to judge and criticize without actually taking a breather and having a moment to just try a little bit of empathy. And if empathy was the first point of reference for people, that would go a long way.
[00:30:45] Carole Blueweiss: And what have you found in terms of the medical world? Do you, have you explored non-traditional methods?
[00:30:53] Damas Manderson: Absolutely.
[00:30:54] Carole Blueweiss: Tell me a little bit about that.
[00:30:55] Damas Manderson: So when I went back to researching that, you know, what makes a cell function, I was actually looking at that from a complementary medicine versus conventional medicine because I wanted to embrace non toxology and, of course, toxology, which is a pharmaceutical route.
[00:31:11] I wanted to look at the laws of nature and look, is there anything in nature that isn't gonna harm Kennedy Rose, but it actually could enhance her body to heal itself as well at that cell level. So yes, I looked at a lot of natural remedies, scientifically validated natural products. I know that there is no FDA approved or even they go through the pharmaceuticals, so that's always something that deters people from looking into it 'cause if it's not FDA approved, but I went past that.
[00:31:41] I needed to look past it 'cause just because it hasn't been approved by a company that's designed to approve pharmaceuticals, it doesn't mean that nature doesn't play a role in a body's, in a person's healing. So I did look at that and actually we discovered something that we thought would work well for Kennedy Rose, and she's actually still taking some natural remedies to this day from what we looked at.
[00:32:07] And looking at the scientific validation, looking at our, you know, anecdotal studies, 'cause sometimes that's the best you've got with natural remedies. And, you know, just be tuned in to be open minded and not, you know, not tune a blind eye. And most doctors hoo-hoo it. But then doctors have done only a very few credits on nutrition or actually understanding that part. So I didn't go to doctors for that advice, 'cause if I did, they would just poo-hoo it.
[00:32:34] Carole Blueweiss: What are the names of these kind of practitioners?
[00:32:37] Damas Manderson: Naturopathic doctors. I've also been to pathologists that have done a 180 turn and have seen that nature actually can be more powerful than pharmaceuticals or in combination with. I've developed a very good friendship with the head of pathology of the VA hospital. And he did his own research on natural remedies and he was absolutely convinced. So he was a person I trusted. Of course, chiropractic doctors, naturopathic doctors I've been to. Another pathologist that I knew that, you know, they actually saw that natural remedies do play a role.
[00:33:11] So, and they were the open-minded ones. They didn't poo-hoo pharmaceuticals. There's a place for that. And they also know there's a place for natural remedies. So I actually went and researched people that actually had a name, that I suppose had their own conversion experience, if you wanna call it that, for allopathic medicine and complementary medicine.
[00:33:29] And so those were the people that I would, you know, get to know and ask questions to help me understand. I just followed my nose, literally. You said in the beginning, I followed my nose. I just, Dina and I have been intentional about not accepting status quo just because a doctor tells you that your daughter is gonna be this for the rest of her life. We are too easy to accept that narrative and bow down to it. And I'm just so thankful that Dina and I said, no. We are gonna take an intentional, deliberate, rational look at every option available to us. Think about it, process it, pray.
[00:34:15] Every dimension of life and dimensions we didn't know that life had to offer, we looked at. And we are still looking at it. And so we embraced anything that made sense and we embrace stuff that didn't make sense, but intuitively we knew it had something in it. And so that's our journey to this day. And whatever we are doing, it's working.
[00:34:40] Because Kennedy Rose with her syndrome and in the severe range, we go to the Cri du Chat conference every year. This is the first year that we didn't do it. You know, because of the situation of, you know, Covid. But they are astonished at Kennedy Rose. And they say, what are you doing differently? And it's an interesting, we'll tell them, and even within our own society, some of them will go, we wanna know more.
[00:35:02] There's a lot more that go, oh yeah right. You know, and it's almost like you ask because you're desperate to help your child, you know, reach the maximum level. But when we share it with you, it's like, oh yeah, whatever, with some things. And that's okay.
[00:35:19] Carole Blueweiss: Why do you think that is?
[00:35:21] Damas Manderson: I think we live in a world that has a very one-sided view, and that's all we get to know. And now you, now we're gonna be talking to another subject I studied into for my own self. And, you know, we have neuropathways in our brain and the neuropathways is electric. And so the information goes through the path of least resistance. So if there is a pattern of certain information that is given to us, say mainstream information, then that's all we know. And inevitably that's all we end up believing. So if you bring in a complementary aspect to it or another thing, there's already a resistance buildup to get through before you have an open mind to research it, before you get to call it for what it is. Yeah, it makes sense. No, it doesn't. And that's what I believe.
[00:36:12] I think there is some strong messaging out there that can literally stop people from researching outside the box. For really good other options that are available to us, whether you're special needs or anything else, there's a lot of really good options available to us that don't get enough attention. We all want answers in life, and if you see the evidence and our daughter is a very good display of the evidence of Dina and I thinking outside the box, acting outside the box and operating inside the box. And it's interesting that when you actually share all the different ways that it's working for us, it's not always received well. It's a cocktail. Some cocktails, you know, goes down real smoothly. Other cocktails, it's like, never wanna go there again. So, you know, it's a cocktail.
[00:37:03] Carole Blueweiss: About that cocktail, have you ever given Kennedy Rose the cocktail of autism medications that are generally prescribed or ADHD prescriptions?
[00:37:13] Damas Manderson: They prescribed her with Ritalin and we weaned her off that because it was hard to tell whether it was working. But she is on two medications that she takes every day. One of them twice a day. And that is for her behavior modification. And then we also give her complementary medicine, which is the, you know, the natural versions. We just have them go side by side. So we are trying to just modulate her immune system. And some of the stuff we give her naturally is actually to detox her because, you know, these pharmaceuticals are rough on her kidneys and liver.
[00:37:44] And I've always been concerned about, they've even told us long term use of these medications is gonna damage your liver and kidneys. Well, no one wants to hear that. So we got two choices. Wait till her liver and kidneys start to pack up or see what we can give her alongside with to put her liver and kidneys and other parts of her body into a repair state.
[00:38:06] Does it work? You know, I suppose the jury is out, but is something working? Absolutely. Is it harming her? No. You know, and I suppose I throw, I follow the doctor's mandate above all else, do no harm. The Hippocrates Oath, we live to that, do no harm.
[00:38:24] Carole Blueweiss: And tell me a little bit about Miles and his relationship with his sister.
[00:38:27] Damas Manderson: Oh, boy. Oh man, he's 21 now. Happily living in New Zealand. He discovered New Zealand when we went back in 2013 and begrudgingly went back. He was an all American boy and now you can't get him out of New Zealand. It's just paradise to him. Although he misses us terribly. And this is the longest we've been apart, when we moved back to America three years ago to do more medical treatments for Kennedy Rose.
[00:38:55] But we are a very fortunate to be a tight family. Miles, he is amazing with Kennedy Rose. But there's one thing that Dina and I were very intentional about and another thing we looked at. A lot of special needs parents can fall into the category, or I should say a handful, of where the normal children end up being caregivers, whether they like it or not.
[00:39:19] And I totally get it. I totally get it. You just get so stressed out, you just pull in all the help you can get. Well, Dina and I made a commitment not to be that with Miles. We did not want to make him a default caregiver. We never asked him to help Kennedy Rose when he was of age to help. We gave him as much equal time as possible, because normally the normal kids get left behind, understandably so.
[00:39:43] You've got someone that's 24/7, you know, that can literally die tomorrow spontaneously. That's enough to cope. You know, you can barely, you don't cope with that, in fact. You just gotta do what you can. But we made the choice that we loved Miles and valued him enough that we just didn't wanna stress him out by making him a caregiver.
[00:40:04] And we, Dina and I said, we'll wait. We will wait till he offers. And then when he offers, then we know he wants to. But before that, we are not gonna, we're not gonna give in, We're not gonna make him a caregiver. And we would have Miles appreciation days. So my goal was, and Dina's goal was and is, if we gave Kennedy Rose an hour, let's give Miles an hour. If we gave her a week, let's give Miles a week.
[00:40:34] Basically, we wanted to be a hundred percent for both. It also meant that I couldn't work and think, you know, and at the time I had the money to do that, and family came first. And I'm so thankful that for the 10 years that I didn't work, as far as making a living, provisions for the family, we were very busy at work keeping, giving Kennedy Rose all she needed, making sure Miles had all that he needed.
[00:41:01] Just hoping and praying that when he hit his teenage years and became a young man, that we would see the fruits of our labor. Didn't know. I'm a risk taker and that was a risk, but I didn't want to be a parent that your normal children look back at you and just said, it was all about the special needs and not about me.
[00:41:21] I just knew that I wouldn't be able to deal with those words and that, and this is not for everybody, this is just for Dina and I. You know, this is how we rolled with this and we were able to, I had the means to do so at the time. Not everybody does. And I get that not everybody, you know, can just drop what they're doing and give it a hundred percent.
[00:41:40] So this is by no way, I'm not saying this is what every special needs parent or parents or family should do. This was just something that we were able to do. We were able to be in that position and I feel for parents that aren't. It's rough. It's tough, it's unbearable, but you find something somehow to live another day.
[00:42:05] So Miles, thankfully, he's an amazing young man. Now he's at the age of 17, 18 roundabout. He offered, hey mom, dad, why don't you go to the movies tonight? I got this. And we just looked at each other. Went, what? I got this. I wanna look after my sister. Seriously, son? You know?
[00:42:31] Carole Blueweiss: Wow.
[00:42:32] Damas Manderson: And of course we didn't say no. We just got in that car and took off. We went to the movies. But he called it, it was his time to show I want to give back. And it just rolled from him so naturally that it wasn't an effort, you know? And he has a girlfriend now that just loves Kennedy Rose. And so they both would say, hey, go. You know, they actually gave Dina and I like three days away, and they said, we got this.
[00:43:00] I'm like, we're nervous. Like, you sure you got this? I mean, they're, we got this. Just go. And that's everything that we've been hoping for. But when it actually came to it, we were nervous. It's like, can we do this? Can he? And it was flawless. I mean, you know, so yes. Miles is an amazing young man. He's just an amazing son. He's an amazing brother. In fact, he's missing Kennedy Rose and us so much that he's planning, as soon as things, you know, settle down, he's planning to come back to the States and he said he wants to come over indefinitely.
[00:43:34] Of course he wants us to move back to New Zealand because he just thinks that's paradise. And it is. It's one of the most beautiful places on the planet, but right now it doesn't have what Kennedy Rose needs. We're thankful to be able to have the ability to make sure that he felt equal in this process. What does it cost me? It's only cost me money. What have I gained? I've gained a loving, wholesome family with a value that we will carry forever.
[00:44:09] Do I want the financial freedom back again? Absolutely. Am I willing to do whatever it takes to get there? Not if it compromises my family. So if I have to make it day by day, then so be it. And that's a tough pill to swallow cuz it can challenge you as a person in every dimension, especially one that's been as driven I have been in business in the past. But no, if you wanna look at a legacy, my family's my legacy.
[00:44:36] Carole Blueweiss: Just so heartwarming to hear an alternative way to look at how you can make a situation into a very positive, even as challenging as it is.
[00:44:46] Damas Manderson: I want to say this, give people some context around this 'cause they're probably listening to me now and saying, well, yeah, it's okay for you to do that when, you know, you had the money to do it at the very beginning. Very true. And I acknowledge this. But I wanna say this. Right now, I got no money. I've actually borrowed against the only house I have left in New Zealand that my mother is living in, and I wasn't prepared to sell that, to kick her out on the street. And I've gone from by choice, from, you know, having what I would consider a very good lifestyle to we got to the point, and especially in the last three years, 'cause the plans that I was hoping that would work here in the last three years didn't work out.
[00:45:36] And I actually have suffered terribly from depression and anxiety. In fact, we bumped into you and your husband when I was actually having treatment in Florida to help me get past that, to reset.
[00:45:51] You know, so I know what it's like to not know where your next meal is gonna come from. This has just been a recent journey. I know what it's like to have your hands tied when you come back to America three years ago in our suitcases, and your plans don't go the way you were hoping to create some financial provisions for the family and take care of Kennedy Rose. It's been one of the toughest three years of our lives. And I didn't know whether we were coming or going. I didn't know. I actually contemplated delivering food for a while. That was about all the mental capacity that I had. So I may sound really good right now. And, you know, I can say at the beginning you had all the money to do it. Yeah, I did.
[00:46:35] But I overlooked one thing when I started that journey, I said to myself, Damas, it doesn't matter if you just throw this into your family. You've made it once. You can do it again. You're an entrepreneur, you're gonna find an opportunity. I tell you what I didn't calculate: how much mental, emotional, and physical energy it's gonna take and the consequences of that. You know, my creative juices are from my mind. That also means my strength can be my weakness. When my creative juices went, 'cause I didn't know how to make it from day to day 'cause I was so caught up in helping Dina with Kennedy Rose that I actually lost my way for any other kind of thinking.
[00:47:21] I was lost and lost for a long time and I've been in some very dark places and if it wasn't for family helping us through some of these times, and that's where the love has come from. You know, how people are helping where they can. Sometimes friends and I talked about some, you know, friends that would turn up and just give us a plate of food.
[00:47:45] You know, another friend, a doctor friend of ours came up to help Dina when she was having some health challenges, when she's been having some cancer scares from stress just recently. And they come and give us some stuff to help her and then in an envelope, there's a few hundred dollars. And I'm like, where did that come from?
[00:48:04] You know? And it's like, wow, there actually, if people don't know how to live life with us, they do know how to try and help us just get through the next day. And those people have come out and it's not, it's I mean, it's been humbling. I mean, no one likes to let you know that you're on the bones of your butt.
[00:48:22] But we've been there and we are on the rebuild again, and I'm thankful for that. But I know what it's like to pull your hair out and you don't even know that tomorrow is guaranteed, whether it's financially, whether it's mentally, whether it's emotionally or even physically. I mean, just with manhandling and lifting Kennedy Rose, I've had two rotator cuff surgeries, my left and right. I've had three abdominal hernias from blowing my stomach, from hernias, from lifting her. I've got a torn knee. I've got a torn hip. It's just, that's wear and tear. I've learned that this stuff can take you down. So I have nothing but empathy and I totally get people from a silent killer called, I'll call it for what it is.
[00:49:07] There's such a stigma around mental illness, and I've been there, done that, and I know that it's something that can come back to me because of the stresses that we have and no one likes to talk about it, but I'm going to. I need to. Because I can give you all the good things that we have done to try and be there for Kennedy Rose, but no one knows what happens in your quiet time.
[00:49:28] No one knows when you're pulling out your hair. No one knows when you're thinking that you just wanna give up. You don't wanna live life anymore because you just don't have the answers. There is no instruction book that says, go through this and you'll have joy. No. So I just wanted to bring that context into it with you is that it hasn't, this journey has not been without darkness and there's been plenty of darkness in our relationship that could have taken us out in a heartbeat.
[00:49:53] And stress comes in many shapes, forms, and sizes. So that's what, when I say there's no judgment with us, I absolutely mean it. I mean it because people cope in different ways. And who are we to judge a person to cope? What we need to be doing is listen, and if we can't help them, at least just pretend to throw them some love.
[00:50:16] And if they catch it, they catch it. If they don't, but in our silence, we can. Let's all project a good vibe to somebody. Because you don't know the story. We all have a story. You know, and so I just wanted to add that part to it as well, that it hasn't been without its challenges. You know, I've looked at life and I've gone, I don't wanna live this life anymore. I'd rather just go die. But, you know, find your why. I've had to readdress my why many times.
[00:50:46] Carole Blueweiss: Maybe I'm gonna say a very sexist thing right now, but that you're a man. Not many Americans will dig deep and express themselves like that and be so honest and.
[00:50:57] Damas Manderson: Yeah. Well, I'll be sexist with you. I don't know many men that would go there and be that straight up and honest, and I feel very lonely. Sometimes, I have men that I talk to and they just wanna look at me and say 'gee, harden up, man.' No, that's a problem to say that. I think men need to be more vulnerable. There's power and strength in a man when he's vulnerable, and I've had to learn that myself, and I don't know how to reach out to other men right now. I'd love to.
[00:51:33] This 'she'll be alright, mate,' or, you know, 'hey, harden up. Just move on. Get on with it.' The evidence of that shows it doesn't work. It creates distance, not togetherness. So maybe I had to have a special needs daughter to understand all of that.
[00:51:48] Carole Blueweiss: What advice or, I don't know if advice is the right word, if you're talking to the dads out there, what are some lessons?
[00:51:54] Damas Manderson: Okay. To the dads, I would like men to redefine the word man up. The way we understand man up is not healthy. What does it mean to man up? It actually means to stand down and take a good look at the situation and stand from a platform of humbleness, stand from a platform that strength comes from saying, I actually don't know it all.
[00:52:26] Pace of strength means that to open up and share your heart. Doesn't mean that it's weak. And also to express an abundance of kindness. Being sure that people know that kindness doesn't mean weakness. Kindness means strength. And as far as our identity with, as a man, it's not in our job. It's not in status, it's not in materialism, it's not on the white picket fence, and it's keeping up with the Joneses.
[00:52:58] It's actually being true to yourself. And then when you can be true to yourself as a man, then you open up the door to let others be true to you and share their heartfelt feelings. And I'm not saying feelings is a way to go by, but feelings is a good way to understand and bring a sense of wholeness and wholesomeness back into the communication process.
[00:53:27] And if men can do that, I think it would be very good for one, a healing process for the man. Definitely a healing process for the woman and a healing process for anybody else around you and your sphere of influence. And children, they're a byproduct of their environment. And you want the next generation, our children, to be the upgrade version of yourself.
[00:53:53] And don't be scared to tell your children that I'm not perfect, but I would like to empower you, my children. To be the upgrade version of me and teach your children to be the upgrade version of you. And that would be pretty neat to have that go around like a virus, but a good virus. Yeah. I would love for more men to be vulnerable.
[00:54:19] If this can touch one person, then one person is taking on something that hopefully would only bring a positive transformation in their lives. And for me, it's not about the masses, it's about the one because the one, you never know about the one that gets touched, that could actually empower the masses.
[00:54:44] So for me, it's about the one. Helping people help people. And the best way you can do that is to like what you're doing. Let them hear real stories. I just wanna thank you thinking that this would be something for you to take further.
[00:55:00] Carole Blueweiss: Thank you so much, Damas.
[00:55:03] Damas Manderson: After the end of this, I'm gonna go leave the car, go into our home and give my daughter a kiss and a cuddle and tell her I love her and I'll see her in the morning. Hopefully.
[00:55:16] Carole Blueweiss: Thank you, Damas, for sharing all your wisdom and sharing your family's story. At least I know I learned so much from your perspective. I just wanted to thank you.
[00:55:29] On the next episode of Wisdom Shared, I have the pleasure of speaking with a very special guest, Jill Bolte Taylor, an incredibly articulate stroke survivor who will share her inside out perspective.
[00:55:44] Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all our other episodes. Visit caroleblueweiss.com. If you like what you're hearing on Wisdom Shared, please spread the word and share this podcast with a friend. Subscribe and leave a review so you can receive some wisdom every month.
[00:56:06] Thank you for listening.