In this poignant episode, Jacob Moench shares the challenges and joys of parenting his son Samuel, who has epilepsy and autism.
In this poignant episode, Jacob Moench shares the challenges and joys of parenting his son Samuel, who has epilepsy and autism. The episode explores how Jacob and his wife support each other and prioritize time for their other children. Jacob also talks about his company, which offers genetic testing for preventative illness, and we discuss the ethical considerations surrounding the use of DNA analysis for family planning. Despite the challenges, Jacob reflects on the profound impact Samuel has had on their lives, considering him an enormous blessing. This episode offers a powerful exploration of the unique challenges and love that characterize Jacob's journey as a parent of a child with special needs.
Jacob Moench is an entrepreneur in the medical industry devoted to preventative genetic testing. He is a devoted husband to his wife of 12 years. He and his wife have four beautiful children, including their oldest, Samuel, who has Autism and Epilepsy. Jacob enjoys playing with his children, basketball, hiking, piano, cooking, and creative writing.
Jacob's blog: https://fathertospecialneeds.blogspot.com/
Jacob's business: https://physiogenomic.com/
Forever Boy: A Mother's Memoir of Autism and Finding Joy
Mark Rober's Video about his autistic son
Steele's Army - Facebook page of an epilepsy family that Jacob recommends
[00:00:00] Jacob: Part of me screams out, I wish I had epilepsy. I wish I had gone through these things so that when my son goes through them, I can give him that reassurance because I understand what's going on. I've been there. But I can't do that. And I'm always going to fall short. There will be times in my life where I won't have experienced the things that my children have experienced.
[00:00:23] Carole: Welcome to Wisdom Shared where parents, children, siblings, husbands, wives, and all other people on the front lines are the experts and where connection inspires change. I am your host, Carole Blueweiss. Today, I have as my special guest Jacob Moench. He is the owner of Crystal Diagnostics that is putting genetic testing opportunities in physical therapy private practices, an idea completely new to me.
This conversation was recorded in February 2023. And frankly, I have been tackling some technical difficulties while editing this piece. I share this because a lesson I learned was what matters most is the content of the conversation, which is far reaching in this interview. So much is discussed that usually no one hears about.
It's Jacob's willingness to deeply express and share so many personal aspects of his life, including his relationships, not only with his now 9-year-old son Samuel, who has autism and epilepsy, but also with his three other children and his wife. One thing I love about making a podcast episode is realizing that when people are given a safe space to freely share their unique stories, the wisdom comes pouring out.
Jacob is a great storyteller, and I'll let him speak for himself. There is so much wisdom in this 41-minute interview. I can't wait for you to soak it all in. Let's listen now to Jacob introduce himself and his family.
[00:01:53] Jacob: I'm Jacob Moench. I own a company called Crystal Diagnostic Labs that specializes in genetic testing for preventative illness. I'm a husband and a father. My wife and I have been married for 11 years now. I have four kids. Their ages are 8, 6, 3, and 1, and my oldest one, my 8-year-old, he was diagnosed with epilepsy when he was 3, and then we got an autism diagnosis when he was 6. Besides that, I love playing the piano, I love cooking, I love basketball and sports, and rock climbing, and I am grateful every single day for my life and my special needs son.
He's just an amazing, wonderful boy who has brought so much into my life that I wouldn't have otherwise.
It wasn't until six months into him being alive that he slept for four straight hours. And he was our first-born child. We didn't realize that there were some babies that actually like slept. And I remember at the time I had a job, it was not what I'm doing now. And my job performance just tanks because my wife and I were just constantly up with a baby.
And then even when he hit six months and he slept for four hours one night, we were blown away. The person who got that shift was real lucky. After that, even from then until today, when he's eight years old, there's still many nights where we're just up all night with our son. It's tough. And so throughout his childhood, we just noticed little things that he did that were a little bit different from what we would expect a 2-year-old to do or a 3-year-old to do or a 4-year-old to do.
But again, because he was our first-born, we didn't think much of it. Because we just thought this was the way kids were and we would see the way other kids acted and we're like, what is going on?
For instance, a great story is we had some neighbors who had a child who was the exact same age as Samuel. And when Samuel was two years old, if you put him down, he was gone. Like he would run and never stop running. That's just what he'd do. He'd run and run and run and run. Even today, he loves playing tag. Tag is his favorite thing to do in the world. He just runs around in circles all day long. And I remember our neighbor who had a child the same age, they were in the front yard one day with their son and nobody was holding their son.
And he was two years old and he was just playing in the front yard. The parents were nearby, but they weren't holding him. And my wife and I, we're just blown away. And we're like, how do you keep him still? How do you keep him in the front yard? What is happening?
Well, this is something we didn't understand. We felt like we were looking into bizarro world. Like that kid is just not like running. What's wrong with that kid? Like, why isn't he running constantly nonstop? We have story after story of those types of things before we got his diagnosis. Where we were just baffled at the difference between, you know, what Samuel does and what other people do.
Right now, Samuel, it's almost like he has two different faces because of his autism and his epilepsy. On a day where he has lots of epilepsy seizures, he will be very still, he won't talk. He'll just sit in a chair and very blankly read books, do stickers, or stuff like that. Very motionless and also very unresponsive. If you want to get him to do something, it's just not going to happen.
And then on days where he doesn't have any seizures, he is constantly trying to run away. He's constantly trying to escape our house, ride his bike, run around in circles, get all his energy out. He hand flaps a whole bunch and stims constantly. And you can just see a brightness about him. But really all of those things are such a joyful thing.
[00:05:27] Carole: Since Jacob owns a genetic testing company, and since he had told me that he did some DNA testing on his son Samuel, I asked him what the results showed.
[00:05:37] Jacob: So a lot of the things we found were in the vitamin, mineral, and food panels. And a lot of them showed a susceptibility to allergic responses to different things like wheat and soy and corn. Corn was a big one for him. There's a pretty darn big list, so it would take me a while to list everything. But in a nutshell, we were able to change his diet to where we eliminated gluten, we eliminated corn, we eliminated all of the things that were going to cause inflammation in his brain.
And as a result, it allowed him to become more cognitive than he otherwise would have been. It didn't cure anything, if you can call it curing something. You could see more clarity in his thinking, and more reasoning behind what he was doing than before when he was eating these things. And then just some other basic lifestyle things like, his body does not get as much vitamin D as other people from the sun.
Or at least it shows that he's genetically susceptible to not getting as much vitamin D in him. And so we give him vitamin D supplements, and that really helps. And we have seen a difference. Again, he's not healed by any stretch, but there's just little things we can do to help improve his life as much as possible.
[00:06:49] Carole: I asked Jacob if he had to choose one thing to say to our audience, what would that be?
[00:06:55] Jacob: Honestly, this might sound like an unconventional answer, but the best thing we learned as we've been researching these things, is the importance of accepting our son as he is. I think that it's a parent's nature to want to fix their child if they think that something's wrong, and I'm certainly no exception to that.
When I realized that there were things wrong with Samuel, especially the epilepsy, we just poured ourselves into fixing this quote unquote problem. Like, we wanted to fix our son and a lot of the books we read and a lot of the things we researched led us to realize that autism, while it is definitely something where we can see cognitive impairment, it doesn't necessarily have to be treated like it's a disease.
There's a reason why a lot of people use the term neurotypical versus neurodivergent because Samuel is living a really wonderful and happy life. And the sooner I embraced that and the sooner I embraced his autism as something that was part of his identity and part of who he was and something I loved about him, all of our lives improved because we were able to work within that scope rather than fixing him. And if you work with a child who's autistic, rather than trying to fix a child who's autistic, you're going to see a lot better results.
[00:08:13] Carole: Do you remember the time you had sort of an aha moment?
[00:08:16] Jacob: Very much so, yes. I'll give you two stories if you're okay with that. So, I mean, obviously it's a progression, right? I remember when Samuel was six years old, I was invited to a celebrating Ukraine event that was specifically for kids. And our friends who have a child who's between Samuel and Jonathan's age invited us to this and the mom of these children specifically, she actually served a mission in Ukraine for a year and a half. And so she was very passionate about this Ukraine stuff.
And we were so excited to go. We were looking forward to it. There were going to be so many things that the kids were going to learn about Ukrainian culture and everything like that. And we got there, there were so many people there. It was too stimulating for Samuel.
And I spent the whole time in the van with a screaming, tantruming 6-year-old. And I was missing out on Ukraine stuff too. So I was unhappy. And I remember I was in that car and there was nothing I could do to mitigate this tantrum. Sometimes people with kids who have autism will just tell you that sometimes you're like, man, good luck stopping that kid from having a temper tantrum. You just kind of have to roll with it.
But I was so angry and I was so upset that I was missing out on this fun thing. My son was missing out on this one thing. He wasn't getting to experience this. And I watched a YouTube video while I was in there by Mark Rober, who was just a role model for me. And it was a very unusual YouTube video for him because he's usually doing YouTube videos on science and engineering.
But this video specifically was about his son who had autism. And the whole video was about how wonderful it is to have a son with autism and how amazing his son was. And how much joy his son brought to him. And my autistic son was screaming in the background. And I was really bitter about this video that I was watching because I was thinking to myself, I don't want my son to have autism. I want him to learn about Ukraine.
And it took a few days after that, but I remember revisiting that video and seeing the sincerity behind Mark Rober's eyes and his voice when he was talking about those things and realized that Mark Rober had truly embraced his son and I had not.
I wanted my son to be different than what he was, and it was a real slap in the face when I realized that I was doing this wrong, and I had a real revelatory moment where I realized that if I want to be happy, I need to embrace my son for who he is. And at that moment, I remember changing, and, you know, there's still days where he throws those tantrums, and I'm upset in the moment, but overall, I've just had a physiological shift in me where I've realized that if I work with my son the way he is, there's a lot of happiness and joy that comes with that.
And I'm really grateful for Mark Rober for putting that video out. I know he's probably influenced thousands and thousands of people. There's at least one person in particular who he allowed a change of heart to happen to because he decided to post a very personal video about him and his son.
The second one was with his epilepsy. It's kind of funny that I had to have two different experiences for two different illnesses of my son. Now, I came to embrace his autism, but I still had not embraced his epilepsy. I was still fighting and fighting to try and fix it. We still are. There was a 3-month period of time where Samuel was basically just having one long seizure. Like, all day, every day, it was just a seizure.
And it was devastating to watch because nothing was working. The rescue medicine doctors were giving us that we're supposed to give if your son is having a seizure for more than five minutes would do nothing. It was such a horrible time of our lives where I was worried any morning now I would wake up and find my son dead in his bed.
Like, I was kind of expecting it. And, you can imagine that there was an intense amount of pain and suffering and grief that came along with that. And I remember there were days where I would curse God. I would curse the heavens. And, you know, people would say to me things like, you're given this special kid, God gave you this kid and it's because you're a special parent and God knew he could trust you with this kid.
You know, things like that. And at the time I was like, I don't want to be a special parent. I don't want to have a special kid. I want my son to quit having seizures. And I would curse God and say, why did you give me this? Because it was really tough. Just the hardest trial I've ever gone through in my entire life to watch my son and wonder if the following morning he was still going to be alive.
And I just remember one day, after my parents had come over to try and lend some support with my son's seizures, we prayed for my son, and I was talking to my parents afterwards, and I really cursed the heavens about it. And I was bitter, and I didn't want to pray anymore, because I didn't care about God, because He obviously didn't care about me, and I was in a really dark place.
And it's hard to explain what happened to me as far as my change of heart goes. But, I realized that this was my son, he was a gift, and that his epilepsy was here for a purpose. And I got to an acceptance phase of grief where I accepted that my son was probably gonna die. And I came to the acceptance phase that this is who my son is and I'm gonna try my very best to help him, but he's gonna have epilepsy and there's nothing I can do about it.
And when you reach that acceptance phase of grief, everything is brighter. The world is brighter. The air is cleaner. Every song you listen to is more crisp. It's like everything about your life is enhanced when you come to the acceptance phase of grief. And I think the thing that I love the most about that experience is I have never been confronted with the reality of mortality more than when I knew my son could die at any minute and that understanding is such a gift to be given because it eliminates any need to complain or be upset or be fearful of the future. And instead, you can just be grateful for every single breath of air you get to take and specifically with my son Samuel now instead of me cursing the heavens and saying, why did you give me this? Why does he have to suffer these ways? Instead, every morning Samuel wakes up I know it's a gift that I get to be with my son for one more day.
And it makes the days so much more wonderful to know that tomorrow I might not have him. And as counterintuitive as it sounds, I'm so grateful for that. And it has just filled my heart so much to have learned that with his epilepsy. And so it was because of the very rock bottom hell that we had hit that made me truly embrace every aspect of my son to where every day I'm just so glad that I have him for one more day.
[00:15:21] Carole: I asked Jacob how religion played a part in his ability to cope with all that was going on in his life.
[00:15:27] Jacob: Oh, it's been integral. It's probably been the most important thing I've been able to rely on in all of these things. I'm Christian. And having a knowledge that God has literally experienced everything you've experienced makes it so that when you pray, you can pray and confidently know that who you're praying to has experienced this so that you never have to feel like you're alone in these things.
A great example of this is, you know, I've gotten stitches in my life. I've experienced that. So when my son fell and he cut his ear open and we had to go get him stitches, I could comfort my son and I could be there for him because I've experienced it. I know what he's going through. And so I can hold him and I can tell him what's going on and I can tell him that he'll be okay.
I've experienced lots of things like that. I can then, you know, comfort my son through. But I have never experienced epilepsy. I've never experienced having a seizure. Those are things that I've never gone through. And so I can't provide that comfort and reassurance and part of me screams out like I wish I had epilepsy.
I wish I had gone through these things so that when my son goes through them, I can give him that reassurance because I understand what's going on. I've been there, but I can't do that. And I'm always going to fall short. There will be times in my life where I won't have experienced the things that my children have experienced.
I've been confronted with a lot of this with, because of my son, part of ways that I maintain my mental health is I write a lot of poetry, I write blog posts, I write things like that, and some are really short. I wrote a little poem about grief. That's only a few lines. Let me pull it up real quick.
Grief is a wonderful thing. It is a path you alone must walk. It is unavoidable, a valley and a shadow. You will flee from it, ignore it, pretend it doesn't exist. You will gnash your teeth, swear, yell, and become bitter at it. You will try to make a deal, negotiate, or persuade your way out of it. You will lament and mourn, cry and feel sorrow because of it.
But grief is a wonderful thing. Your sorrow will become joy. Your negotiation will become submission. Your bitterness will become forgiveness. Your pretending will become acceptance. Your shadow will become green pastures. Grief is a wonderful thing.
It's more for my own mental health, just being able to write and post somewhere. I've noticed that it helps me calm down during one of those more difficult episodes. But I write a lot, so the blog that I do, it's just titled fathertospecialneeds.blogspot.com and the title of it is A Father, His Family, and His Special Needs Son.
[00:18:41] Carole: So as you can see, there's a lot going on in Jacob's house and in Jacob's life. So I asked him what he and his wife do to take care of themselves.
[00:18:49] Jacob: That is a really important question to ask. Anybody who has a companion, the two of you need to sit down and work together in love to figure out exactly what the needs of one another is so that those needs are met.
You know, it's similar to the whole airplane analogy. You gotta put the oxygen mask on you before you can help your kid. My wife and I, luckily we have a great relationship. We communicate often and it's ever evolving as far as like what our needs are. But right now, our routine is this.
At night, she's responsible for the baby. So she takes care of the baby all night long. And at night, I take care of all of the kids. And then at six o'clock in the morning, I wake up and I do all of the morning stuff with the kids. I get up with them. I get them dressed. I brush their teeth. I take care of my special needs son. I do everything for him like that.
And my wife will hand me the baby as well. So I'm taking care of all four kids at six o'clock in the morning. Then my wife will go and sleep for an extra couple of hours, to try and make up for being up with a baby all night. And then at eight o'clock I go to work and I hand the kids off to her.
And then a couple of other things we do is one night a week, every Thursday, my wife gets the night off. She's a stay at home mom. So she's at home with four kids all day, every day. So as soon as I'm off work on Thursday, she leaves and she goes out to eat. She gets a pedicure. She loves reading. So she'll go to the library and get a bunch of books and read and just have some time exclusively for herself, where she gets to do whatever she wants and just take care of herself.
And then as far as I go, because I'm a business owner, the hours of eight to five, I am running my business, but that's also an agreement that my wife and I have where I can do whatever I want between the hours of eight to five as long as I'm also providing an income for the family.
For instance, taking time to do a podcast like this, that fills my cup and I'm able to do that. In times, I'm going golfing during those hours of eight to five, sometimes it's a video game, you know, so I still very much work. I work really hard on my business, but I make sure that every week I have a few hours during that eight to five time where I focus on myself, focus on my mental health and make sure that I am doing okay.
And that's the agreement my wife and I have come upon for that. And then a couple of other minor things like just to keep the house in order, we have an agreement that she puts the baby to sleep every night, and then I put the other kids to sleep, and whoever finishes first will clean the kitchen until the other person is done putting kids to sleep, and then as soon as everybody's asleep, we're done doing housework.
I'll do housework in the morning before the kids wake up, but as soon as both of us are able to be together uninterrupted, that's time for her and me, we don't focus on anything else but one another and strengthening that relationship so that we can grow together. And then every Friday at four o'clock, no matter what, it's date night, no matter what. And the babysitter will come over and I'll tell you what, that's sacred time. My employees will tell you that like Friday night, they don't call me.
The statistic right now is that 85 percent of all parents to autistic kids end up getting divorced. And it makes sense because you're in a battle every day and you're stressed all the time. And that stress leads you to do negative things to people you love. And so it is so important. If I could give one piece of advice to parents of an autistic child, it is so important to in those moments where your son is sleeping or there's even 10 minutes where they're preoccupied, you sit down with your spouse and you turn toward them and you ask them what their needs are.
And you come up with a plan to make sure that one another are taken care of. Because if you don't do that, you are just going to be completely frayed until eventually you have nothing left to give. And it leads to parents fighting and eventually leaving one another. Even though it would be so much easier if they turned toward one another and just worked together.
We're also blessed with a lot of support. I'm aware that there are plenty of parents out there who don't have a babysitter who knows how to work with their special needs child. And my heart definitely goes out to them. Every parent of a special needs child has very unique individual circumstances that are really hard.
[00:23:25] Carole: So if you're like me and you're watching a parent struggle with his child who might be having a temper tantrum, the thought might go through your mind as it has through mine, I wonder what I could do to help. And usually I say to myself, I have no idea, I better stay out of it. So I asked Jacob what he thought was a good way for people to offer support and help.
[00:23:49] Jacob: My wife and I have talked about this a lot. And when people offer us support, the primary thing we request when somebody is offering to do things is we request help with ancillary stuff. Let me give you a good example. Every six weeks, my wife has to fly to Washington with Samuel and the baby so that she can do some neurofeedback with Samuel at a doctor's office.
He's a specialist, he's only in Washington, so she has to fly every six weeks by herself. And there was one day where Samuel, he's running around, my wife is holding a crying baby, and there are lots of people who come up to her to try and help her by interacting with Samuel. And the problem with trying to interact with a neurodivergent child is a lot of times, man, you're messing with a minefield.
If you do one wrong thing, it's going to make the situation exponentially worse. So, if I could give parents of neurotypical people, or if I could give advice to just anybody who's trying to lend support, instead of saying, can I babysit your son for you? What I would say is, while you're taking care of your son, do you need me to cook you a meal?
Or do you need me to do the dishes? Or can I help you vacuum? Or can I hold the baby while you take care of your child? Those things are very helpful. Because then that allows us to only focus on Samuel and do the things that we know through eight years of experience will be beneficial. Another good example of that is, I went out to eat with a couple of my employees who I absolutely love.
And at the end of the meal, my son was with me because my wife had some emergency stuff that she needed to go to. And so I, I brought my son with me. And at the end of the meal, my son was having a tough time and he was throwing a little bit of a temper tantrum. And with the best of intentions, one of my employees went to go pick him up and hold him because she thought that would be, in a normal child, that might be something that could comfort that child in that moment. But with my son, Samuel, who's neurodivergent, that was literally the worst thing anybody could have ever done in that moment. And it made the tantrum explode and just so much worse and everything was awful because of it.
[00:26:13] Carole: I asked Jacob how his children respond to Samuel. And what might it be like for his siblings to watch their parents give Samuel so much attention?
[00:26:23] Jacob: It's a great question and a really important one for sure. There's a book called Forever Boy that's written by this woman who started a Facebook fan page called Finding Cooper's Voice. I'll shoot that Forever Boy link to you so you can put it in the notes. In that book, one of the things she talks about is how Cooper's younger brother is eventually going to grow up and have his own life. And she is terrified of what's going to happen to Cooper when she and her husband die. Who's going to take care of him?
And it's a really difficult situation because you don't want to expect your younger child to carry the burden of this special needs person. That's not their job. But at the same time, you want to make sure that your son is taken care of. And you want to make sure that they have a good and wholesome, loving relationship.
And one thing that she talks a lot about in that book is how blessed her younger son is to have an older brother with autism. And I've experienced that as well in our house. They fight, they bicker, you know, they do all the sibling things that everybody else does. But my son Jonathan just has a really unique opportunity that most middle children don't have where even though he's younger than Samuel, he's the older brother.
There are times when Samuel will come to Jonathan excited to show him something that he drew and watching Jonathan say, wow, Samuel, that's amazing! As a younger brother, dude, my older, I'm the youngest in my family, if my older brother brought me a drawing, I'd be like, get out of my face! And my older brother would never come to me with something he was excited about. That's just something that doesn't happen.
And so Jonathan is in a really unique situation where even though he's a middle child, he's actually the oldest in reality and it really makes for an interesting dynamic there. A couple of other things that I've noticed is if you're not careful, all of your time and attention can go toward your special needs child.
And man, it makes those other kids feel very neglected. There are certain things we can do to mitigate that. Every Tuesday night is date night, and we go on a date with one parent and one child. So me and my wife, Melissa, we alternate, whoever the child picks that they want to go on a date with that week, they go on a date with that parent.
So, this Tuesday, it's Lauren's turn, my daughter's, and she already told me she wants to go get pizza, and then she wants to go get ice cream, and then she wants to go swimming at the rec center. And so, on Tuesday, at 5 o'clock, as soon as I get off work, she and I go on a date with just the two of us, and she gets that individual attention from a parent.
I think it's really crucial. And then there are other things we do, like we'll do one-on-one vacations with our kids. We can't really go on vacation with Samuel. Any environmental changes make his seizures a lot worse. So we're kind of homebound. So in order for our kids to have some of those experiences that are more traditional, like going to Disneyland or, you know, going on vacation somewhere or anything like that, we just do with one parent while the other parent stays home with Samuel.
And we alternate those things. And so that's, those are some of the things we try to implement to make sure our other children feel seen and feel heard. We're still gonna fall short. Like, it's just part of the nature of having a special needs child. But, in addition to that, our children get the blessing of having a special needs sibling, where they get to learn selflessness in a way that other children might not be able to.
And they get to learn how to work with somebody who is neurodivergent, who's not the same as them, and be empathetic and supportive. There have been plenty of times where Jonathan has just stepped up. And if he sees Samuel having a grand mal seizure, he'll go and hold Samuel's hand while he's having that seizure.
I'll tell you what, as a parent, seeing something like that, it's just one of the best things you could possibly see is watching your special needs son's sibling showing love and compassion for your child who's suffering.
[00:30:42] Carole: I haven't really actually met you in person yet, but I met your partner at the physical therapy combined sections meeting in San Diego. He was talking to me about the business that you and him are launching. I was interested in what he was saying because I just couldn't even imagine what he had in mind and so I was drilling him and he was telling me basically that it's about genetic testing and having it available for physical therapists as another tool to help with intervention and I'm going to let you take it from there. What is this business that you're starting?
[00:31:19] Jacob: Our business is called Physio Genomic. The reason we started this genetic testing is specifically because we really wanted to have a preventative approach for health care. I've been in the lab business for many years, and there are lots of genetic tests in the lab business, but most of them are done retroactively, or because you're already fighting illnesses and diseases.
And what we've learned, as I've been in the lab industry, is that with genetic testing, once you have somebody's DNA, You can find out hundreds and hundreds of susceptibilities that they might have based on their DNA that could affect them down the road. I mean, even 50 years ahead of where they are right now.
And it's really something that's not utilized in the medical community. We put together panels of genetic testing that can be done where you can look at well over 200 health risks that your body has based on your DNA that you can do something. For instance, a big one is vitamins and minerals. It can show you based on your DNA what you're likely to have as far as vitamin and mineral absorption goes. So, you know what things you should take more of and what things you should take less of right now based on your DNA.
And then there are other things as well like Alzheimer's If you have a strong genetic susceptibility to Alzheimer's, even if you're 30 years old, there are things you can start doing right now as a 30-year-old to try and mitigate that degeneration when you're in your 70s and 80s.
And so it's really just designed to get in front of your health and do preventative medicine and preventative wellness rather than just going to see a physical therapist before you're hurting or after you're hurting or going to see a doctor because you have chronic diseases that ultimately could have been avoided with some lifestyle changes early on because you knew that you had this genetic susceptibility.
And one of the reasons we're specifically marketing to physical therapists is because in our experience, we've found that physical therapists often have a certain level of altruism toward preventing illness with their patients. They're all about you healing your own body and putting in the work to do it.
And we've found that this resonates really well with physical therapists, where they can take a look at all of these things that they're genetically susceptible to and put together a plan for the patient to make sure that they never have a rotator cuff injury or soft tissue damage or anything else that they might be genetically susceptible to based on these DNA results.
[00:33:51] Carole: It's super interesting just to hear the ideas. Then you have the choice, right, whether you actually want to know or you want to go through with all the tests, because I'm sure a lot of people are thinking out there, like, do I really want to know?
[00:34:07] Jacob: The physical therapist panel, a lot of them are revolving around things like inflammation, soft tissue damage, rotator cuff injuries, different things like that, where, and there are 200 health risks on the panel, but anything that we know physical therapy can mitigate, we have that on the physical therapy panel and the goal would be for you as a physical therapist to have that ideal patient come in that you almost never see who says, hey, physical therapist, I'm middle aged. My body is just starting to hurt a little bit, but I've always been active. What can I do to make sure that I stay healthy and fit and active and a physical therapist would just drink up that patient and say, look, here's a DNA test.
Let's let's do this, see what your genetic susceptibilities are. And then we'll put together a. physical therapy plan, a wellness plan, make sure that you don't run into any of these risks that you're genetically susceptible to. The idea would be to put the patient on a workout plan and a certain regime of things that they're doing now so that they offset the risks that are shown in their genetic test.
And then it gives the patient a proactive tool, to stay as healthy as possible based specifically on their DNA. So it's not just a generic, hey, stay healthy, do this and that. It's your DNA suggests that these are the main target areas that you're going to have problems with. If you've ever heard of the human genome project, it's the project that basically is cataloging every gene in our body and what they are susceptible to, right?
And there is new information that's coming out and new science that's coming out every single day. So everybody who takes this test, we have them in our system so that if there's a new discovery or new science that comes out that affects them, it shows that there's additional risk that they could be concerned with, we reach out to them and we let them know that there's new things for them to look at with their DNA test.
And that's for the rest of their life. As long as our company is around and as long as they're alive, we'll continue to send them correspondence relating to whatever their DNA is showing could be an additional risk. In addition to that, they can also get a counseling session with a genetic counselor.
[00:36:19] Carole: Are there companies that do what you do?
[00:36:21] Jacob: 23andMe basically just, they're just for somebody who's curious about their DNA, which is great. I think that's a great test. And if that's what people want is just some filling of curiosity. It's a wonderful test and it's also very cost effective for that. Ours is designed to prevent illness.
What we do is called whole exome sequencing, which is a very comprehensive way of sequencing your DNA. Instead of 25,000 genes and all of their variants, they look at like maybe 500 genes and none of their variants.
[00:36:52] Carole: What if someone came to you or came to a physical therapist and said, hey, I just want to see my genetic testing to make sure that I'm not going to have a child that has a disability of sorts?
[00:37:02] Jacob: Wow, that's a tough one. This is really a unique question. I have never heard a question like this, so I'm grateful that you asked it. Wow. So, this would show all of their DNA, and it would show all of their risk profiles. None of the risk profiles mean that they definitely have it, and none of them means that they will definitely pass it on to their kids.
My wife and I don't have a history of epilepsy and autism. Neither of our parents or their parents have a history of autism or epilepsy. And our son has autism and epilepsy. If somebody's going there to just get a feel for like what the health risks of their children would be, man, I would tell that practitioner to let them know that, look, we can take this DNA test so you can look at what you're genetically susceptible to, but there's a good chance your child's genetic profile is going to look very different from yours.
And just because you're at risk for something doesn't mean you have it and doesn't mean your child will have it. I feel like it would be really irresponsible for a practitioner to say, your child is likely to have this or that based on their genetic profile because there are just so many variables that we don't understand right now in the DNA testing world.
Also, from a personal standpoint, man, I would not deprive a parent of having somebody with Down syndrome or autism. They are just such a blessing and oh gosh, it would just break my heart for somebody to make that choice because they thought that they might have a special needs child. We're trying to be really proactive with people to help to live their best lives, not to make them afraid.
And those for-profit businesses are clearly placating to fear, especially with parents. I mean, with every new thing that comes out, it does raise a whole cacophony of moral and ethical dilemma questions. What is your sphere of responsibility versus what you allow nature to do on its own. Between you and me, with regards to having children, I can certainly understand why somebody would want to do that.
From a personal standpoint, I feel like that should not be a catalyst to decide whether or not you have a child. And I also don't think it should be a catalyst to decide who you have a child with. This is just from my own personal moral and ethical feeling. I would really hope that any practitioner who's presenting this information to parents would also give a lot of resources of parents who are happily raising a child with whatever genetic information that child has.
For instance, if I found out that my first-born son was guaranteed to have autism and epilepsy, man, that might've been a tough choice for me. Like I might, I might have allowed that fear to prevent me from having my son. And that would have been one of the worst decisions of my entire life because my son has brought more to my life than anything else I've ever had in my entire life.
And I can't imagine life without my perfect boy who I love. Two things I would just like to say real quick is I am perfectly happy with you giving any of my information out to people. My son is such a joy and a blessing. So many people see what was assumed that it's awful and that we regret it. And that's not the case.
It is really hard work. It's the hardest work I've ever done in my life. And there have been times where I would have said it's awful, but now I'm grateful for everything, but I also am aware that it can really take a toll on people's mental health. And this is something that people don't need to suffer with alone.
There are lots of resources out there and lots of people out there like myself who want to stand hand in hand in these everyday battles with difficult circumstances.
Carole, I really appreciate you doing this. This is really needed. Just raising awareness in the world for parents who are going through stuff like this. I'm really grateful for you and for what you do on this podcast. And I appreciate all the hard work you're putting into this. I know that it's a passion project for you. So thank you as well.
[00:41:01] Carole: Wow. Thank you, Jacob, for sharing with us all your wisdom and all your thoughts and feelings about DNA testing, genetic testing, what it's like to have special children that you have, four of them, and what it's like to have a supportive wife and what it means to be a supportive husband.
And all the trials and tribulations that go along with having a family. And I know that my audience appreciates hearing your story. If you do want to get in touch with Jacob, you can find his contact information in the show notes, along with all the other information that he had mentioned in this episode.
Thank you so much for listening to Wisdom Shared. If you enjoyed this episode, please be sure to check out all the other episodes. Go to caroleblueweiss.com or wherever you listen to podcasts. If you like what you're hearing on Wisdom Shared, please spread the word and share this podcast with your friends. Leave a review and subscribe so you can receive wisdom every month. Thanks for listening.