David P. Traver, M.D., FAAP joins the show along with Cameron Straw, Certified Nutrition Consultant (CNC), to discuss what it takes from all of us to build the right team of support around those we love with special needs. Navigating the healthcare system can seem like a daunting task but when we remember that it's about building the relationships between those on the team we can never feel like we're trapped. Continue to look for those who are willing to go the extra mile while staying humble and hungry to always provide an answer is key to your team's success.
Digital Scribbler's podcast focuses on inclusion. Telling stories and providing tools for anyone to begin their inclusion story.
Friendship Circle – 20 Tips Planning Doctors Visit
NIH Impact Health Care Expenditures
Parents of Kids Social Contribution
Care Planning for Future Health – 10 Questions to Answer by Lucile Packard
David P. Traver, M.D., FAAP joins the show along with Cameron Straw, Certified Nutrition Consultant (CNC), to discuss what it takes from all of us to build the right team of support around those we love with special needs. Navigating the healthcare system can seem like a daunting task but when we remember that it's about building the relationships between those on the team we can never feel like we're trapped. Continue to look for those who are willing to go the extra mile while staying humble and hungry to always provide an answer is key to your team's success.
Digital Scribbler's podcast focuses on inclusion. Telling stories and providing tools for anyone to begin their inclusion story.
Friendship Circle – 20 Tips Planning Doctors Visit
NIH Impact Health Care Expenditures
Parents of Kids Social Contribution
Care Planning for Future Health – 10 Questions to Answer by Lucile Packard
Hello and welcome to"This Is Me," a podcast about inclusion for families and communities. A quick note before we get into the podcast: any health related topics discussed on the show are for informational purposes only. The information herein is not medical advice, nor should it be treated as such. Please contact your healthcare provider if you require medical advice or assistance. Enjoy the show.
Russ Ewell:Hello everyone. My name is Russ Ewell. Today I'll be hosting the,"This Is Me" podcast. Our podcast is one that focuses on the power of inclusion, including typical and special needs children and adults in the same programs and making sure that to the best of our ability we can advocate and encourage people to include those who have unique needs in every aspect of our community. Today we're fortunate enough to have Dr. Dave Traver with us and our podcast theme for today will be finding a special needs doctor. We also have Cameron Straw with us. Dr Traver graduated from Boston University School of Medicine, did his residency at Boston City Hospital, Boston Medical Center. Also worked for years in international relief efforts throughout Asia, the Philippines, Vietnam and Cambodia. Trained at Stanford for child psychiatry. Was involved in research meetings and continues to be involved i n research meetings at UCSF Autism and Neurodevelopmental Program o r A& P. Stanford research meetings for the Autism Working Group.(also A WG). He's been involved in and c ontinues to be involved in those. MAPS conferences for autism as well. The Bay Area Autism Consortium, where Stanford, UC Davis, Kaiser Permanente and UCSF come together to share the latest in research, educating those in both medical and educational and scientific fields. And then also he's a Generation Rescue provider, which we'll discuss more later, in particular related to how much, uh, how expensive it is, rather for those special needs families to meet the medical needs of their family. We're lucky enough to be also joined by Cameron Straw, who's a certified nutrition consultant, a Bauman College graduate. And we're excited because Dr Traver's journey has been a lengthy one in the arena of pediatrics and then autism as well. And Cameron's just beginning his journey in that regard. So as I said, we're excited to talk today about finding a special needs doctor. And one of the things I want to do right at the beginning is pick out a couple of quotes from a movie I really enjoy called Patch Adams. And I'm going to put those quotes to Dr Traver and even Cameron can comment on them. And the reason I bring that up is because as a father of special needs children, Patch Adams is one of the first movies that really encouraged me about how medicine could innovate and create solutions for my children. And Dr. Traver is someone who I believe innovates and create solutions for not only special needs children, but also children who are typical. So Dr. Dave Traver, Dave, I want to ask you what do you think about when you hear this quote:."Death is not the enemy, sir. In differences, you treat a disease, you win, you lose. You treat a person, I guarantee you, you'll win no matter what the outcome." Patch Adams. What comes to mind when you think about that?
Dr. Dave Traver:That's more than a quote. I think it is a conviction that all of us should be thoughtful of, especially those of us who are in the medical field, the healthcare profession at large. I think that in the, in the current climate of healthcare, it's no secret that many individuals feel, at best, somewhat managed and perhaps at worst neglected or even orphaned. And these are terms that I employ basically from my patient population and the families who have come to me. I certainly can't speak for every individual in our country feeling that way. I'm sure there are many people who have good experiences and I'm grateful for that. That's obviously one of our goals as professionals, but I don't think that that's universal. So I believe that the system, which is a very stressed one, is largely dysfunctional in certain respects, unfortunately ends up relegating the number of people we have seeking care today to the kind of situation where they can feel more numerically, s een on a numerical basis, than feeling that they're individually and personally attended t o.
Russ Ewell:Awesome. One of the questions I had for you, starting out, in addition to maybe one more quote is what made you want to go into medicine?
Dr. Dave Traver:I chose biology because I was always interested in science, but my choice to go into medicine was a bit fortuitous in the sense that the university I attended offered a somewhat innovative program. It was one of the few universities out east that offered a combined program where the undergraduate experience was molded or folded into the medical school curriculum such that my last two years of the university, I have not only earned enough to earn my bachelor's degree in, for me, biology. You could choose any discipline if you desired as long as you fulfilled that. But, I would go over to the medical school campus, in my last two years and take courses offered by the faculty of the medical school and they fulfilled my degree as a biology major, but also fulfilled my requirements in my first year of medical school, which tends to be very, very torrential in terms of the academic load. When I got into that program, and I was encouraged to apply to that because I was heading for research and development. I was intending to go into cell biology and those around me, uh, really, it's somewhat amusing. They actually had to bring me the application for the program to my dorm room because I was so lackadaisical in pursuing this. And they said, we want you to fill this out. These are my dormitory floormates. And they knew what I was going for and they said, let's do this, Dave. I ended up filling it out. I had done very well in some of my courses in the university and I got in. And low and behold, unbeknownst to me, my life course changed direction on a dime.That was unexpected. I've never forgotten that. I do not consider this to be a mistake, but it was not expected in any way, shape or form.
Russ Ewell:That's a really incredible story because I've known you, we both went to school- I hesitate to say you and I went to school together because whenever I say that people say, oh, you're a doctor too. And I'm like, no, I went to school for less stress, not more stress. But you worked at Boston City Hospital and then you d id international relief. What made you... B oston C ity's right in the middle of the firestorm of everything that happens in Boston. So that must've been a tough go.
Dr. Dave Traver:As many are aware, perhaps many are not, this is the system. This is the facility after which St. Elsewhere was modeled on, the television show.
Russ Ewell:I did not know that.
Dr. Dave Traver:And Boston City really carries a number of accolades. It's the Lead Poisoning Prevention Center for the Greater Metropolitan Boston Area. It clearly is the number one urban hospital. It obviously sees a certain pattern of trauma that may not characteristically be encountered in community hospitals. It's an academic teaching institution. But I wanted to be in Boston. Boston is known for its medicine as a number of people know. And that was one of my primary motivations. But the other one was because it focused on primary care. Primary care is where you're on the front lines. You are not- and without any disrespect, I actually do hold these individuals in high regard- subspecialists, whether they're hematologists or dermatologists, it doesn't matter. But primary care was what I was looking for because I wanted to receive a background that would be somewhat commensurate with the possible future option to go abroad, to go international, to be able to be on the front lines of healthcare delivery.
Russ Ewell:This is important because I think your journey in medicine, there'll be a lot of parents listening today, but there will also be students who are trying to decide, for instance, whether they want to do research or they want to be involved in the clinical side. And so as they listen and they hear your journey in medicine, it's very exciting, because it seems like it was a bit of an adventure. What do you think the international work did for you as far as your understanding, empathy, appreciation for patients? I know I saw you at work, I think in the Philippines once and it's a lot different than Boston City Hospital.
Dr. Dave Traver:Without a doubt. I carry with me the battle scars of working on the international field. I'm very grateful, I'm very proud of those. What I mean by battle scars is that no human being can go through that kind of experience and come out unchanged. The number of people I saw on the foreign field, the sheer number of people are often five times what a normal ER sees in one day. We saw that within four hours in Cambodia.
Russ Ewell:Incredible.
Dr. Dave Traver:In the Philippines I worked in the garbage dumps where up to 100,000 people lived in one settlement. I believe that was when we actually saw each other back that year.
Russ Ewell:Yeah. That would've been it. Yup.
Dr. Dave Traver:And to see and to understand what these people must do every day changes how you deliver medicine because I can no longer rely and so question myself in a cocoon of professional terms and try to, perhaps even inadvertently, get away with speaking in a certain way that disallows people to ask questions. These are people who are surviving and I think seeing their lives enabled me to understand on a much more compassionate level what each person struggles with when they come to a physician. They're not just bringing a condition, they're bringing their life.
Russ Ewell:Yeah. That reminds me of the Patch Adams quote that one of the challenges of medicine- and of course I know nothing about medicine except as a recipient, and having people care for my kids- bedside manner or social ability is key. But it seems to me that your journey is one of both academic rigor, Boston University, Stanford, Boston City Hospital. So there's a lot of rigor there, but there's also the experience of putting your hands on people who in no way, shape or form could ever compensate you for what care you gave them. And I wonder sometimes in my mind if those experiences, I know a number of doctors have a variety of experiences, but if those experiences are to some degree, a prerequisite for being able to have the kind of care for people that is more personal and still clinical. I tore both my Achilles tendons as you know, I've got a little injured back today. And Dave, I can't complain about it because Dave, when he was in med school, we used to visit him. We were all friends and he was studying for med school while his back was out and couldn't even go to class. And so I won't complain today about my back being out, but I would like to, but I can't in your presence. Let me go get Cameron in here for just a moment. So Cameron, you decided to go into nutrition and I just want the folks out there to hear a little bit briefly about how you journeyed toward that. Like why did you pick nutrition? Are you into just helping people stay in shape or what's the idea behind nutrition for you?
Cameron Straw:For me, getting into nutrition, it always seemed like food was something that interested me because I saw its direct correlation to how it made me feel. And there was always something interesting watching people try a new you know, berry or put something in their shake. It seems like, you know, since I've been alive and come of age, there's a lot of diet trends going on. And so this piqued my curiosity quite a bit and my uncle was a chiropractor and so he has also used a different dietary techniques in his own life but also with clients. I've always asked him questions and then he finally was like,"Normal people don't ask me these kinds of questions. You should go take a class on this." So I was like, alright, we'll see. Then I started realizing a lot of people had health challenges around me and I wanted to help somebody. I wanted to have answers for somebody instead of just feeling helpless to be able to help my friends and family.
Russ Ewell:Okay. That's excellent. So I understand, you and Dave, then there's a sort of a crossing of the disciplines you're involved in because I know that Dave and we'll get into some of the answers to the questions about finding a special needs doctor. Just wanted you to get to know Dave a little bit. We still haven't explored the neurodevelopmental side, but we will. I think what both of you are talking about is the integration of medicine, about the willingness to have a multidisciplinary approach, and to realize that as a number of doctors are doing, I know Dave does this, that the food you eat, the medical care you get, they're interconnected in so many different ways. And a lot of people still aren't that aware of that. I mean you can see that when you go to the grocery store. What stores would store sell versus what people need can be very different. Not that I didn't enjoy my hostess Twinkies and cupcakes when I was younger to a great degree.
Cameron Straw:We all did, we all did.
Russ Ewell:When you're young, you can enjoy yourself. So what I want to get into and we will come back as Dave did a lot of work at Stanford in the neurodevelopmental arena and I'm hoping, Dave, that maybe you can tie some of that in as we get into some of the answers to questions that people have. What to look for in your doctor and how to navigate the healthcare system. That's what we want to jump into now. So if you're out there and you've got a doctor for your special needs child or adult, and you're wondering, okay, how can I do better or we seem to be missing things or I don't feel like I'm doing things comprehensively or my doctor doesn't seem to have much confidence, or have the ability to look ahead. He or she is in reaction to what we face, not proactive. And so what do you do to find a doctor? Couple of items that you might want to look up on your own is NIH had an impact healthcare expenditure study that they did and they found some interesting things about out-of-pocket medical expenditures. A UNC Chapel Hill study was published by the National Institute of Health and it says that typical range, the typical child or adult range of medical expense is$676 to$3,181 and I want both Cameron and Dave to get that number so they can kind of comment on just the expense.$676 to$3,181 for those who are typical neurodevelopmentally typical or neurotypical. For the special needs range, the low end number is$2,669 to as high as$69,906. So you're talking about on the low end, someone who has special needs can spend$2,000 more. On the high end, someone who has special needs can spend approximately$66,000 more. So oftentimes when there's discussions of policies and legislation regarding people who have special needs or disabilities and their families, the amount of money that is needed to be spent is extraordinary compared to the typical person. And in America's healthcare system right now you have a lot of people saying our healthcare system is broken, but that's broken for typical people. If it's broken for typical people, how much more broken is it for those who have special needs? So Cameron, I'm going to go to you first. When you hear that extraordinary difference, what comes to mind? How do you react to that?
Cameron Straw:I think it's sad first of all that people that already have the emotional burden, adding another financial burden on top of that which is not even in the same range or category as the typical, I mean you're talking about tens of thousands of dollars more being spent out of pocket by families that are already suffering. And I think that's just a travesty. And definitely speaks to a broken system that, as you said, needs some work done.
Russ Ewell:Yeah. Dave, what do you think about regarding that? I'm not necessarily asking you to address how to solve the problem financially because that's something that has got to be solved by a lot of different people, but when you look at it and obviously you see people in your practice who are facing this, what would you want people to understand, not just special needs families? What would you want people who don't have special needs families to understand about the expense?
Dr. Dave Traver:It's hard to answer that question. There are so many different horizons that come to mind when I look at or hear these figures that you shared. And I of course make those incarnate because of the families that I see or I've come into contact with in some of the presentations or lectures I've given in different places. I think to address what you asked me directly, what would I like families of typical members to understand. The average family who does not have a special needs individual as one of their members is at an extreme disadvantage for understanding the amount of financial, emotional and life stress that a family who does have one or a number of members in it with special needs, endures. Because there are so many different ways that that financial discrepancy, if you want to use that word, cascades into challenge and into hurdles that you don't imagine just by looking at the numbers. So I think it's important for people who are living their life,and everyone has their own challenges in life, we obviously know that. But for people who don't have a special needs member, they need to understand that these other families are just trying to survive. It's not even an issue of finances alone, but the finances themselves pose, as you could probably imagine, they cascade into"What are we going to give up? What other domain in our life do we have to say goodbye to in order to be able to float the boat for our child's therapy?" Et Cetera, et cetera. And that creates not only additional stress but disrupts their life.
Russ Ewell:So when you look at that and you see the need, did that have anything to do with you choosing to take your capacity to practice medicine to an entirely new level by adding the neurodevelopmental layer? Did you seeing the need of families, the difficulty, the lack of answers, did that have anything to do with it?
Dr. Dave Traver:One of the reasons I went to, I had the privilege of studying in a postgraduate capacity at Stanford's Child and Adolescent Psychiatry division was because when I went through that program, this was on the early part of the curve in terms of spectrum disorders. We really didn't use that term with the robust nature we do today. But at that time there just wasn't much out there. And so I decided to go with the flow and find out what traditional or conventional healthcare offered to these individuals. And as a result of that, it became very clear to me as I would sit in some of these interviews and we usually did a two day interview process over over that span of time after which we would generate an evaluation and recommendations, et Cetera. What became extremely obvious was that these families not only were desperate as anyone would be with any kind of illness or condition. They were desperate, but there was a level of separation between what the professional teams were able to offer to them and what the parents or loved ones were really searching for. They were looking for more than just put your child in a school, make sure they get these accommodations, do some physical therapy. And I know I'm jumping ahead and I don't want this to be too distant or digress.
Russ Ewell:Feel free to jump ahead.
Dr. Dave Traver:But one of the things with autism that burns, at least in my mind and in who I am as a professional, I know really bubbles inside the very being of all of my parents. And that is what in the world is going on? Why is this occurring? And in medicine you are not taught to ask why is this occurring with certain conditions because we just don't have the answers. And it can be considered, I hate not being totally politically correct here, but it's not considered an appropriate use of time to discuss this because you only have a certain amount of time in each encounter. But my parents want to know. Not so they can become smarter, but because that's a very understandable natural and in my mind, ethical thing for them to ask about their child. Why did this occur? And they want to know this because ultimately it may hold, as you might guess, ramifications for the child's improvement,q gain or recovery. Obviously if we know some element of why, how this occurred, putting the right pieces in place down the road have merit versus, oh, we don't really care about that. Let's just try to do some therapies. And I think our system tends to operate more in the latter.
Russ Ewell:It seems like, I'd say probably if you'd said that in the 1980s that would have been more politically incorrect. But I think today, don't you see a shift going on where more and more doctors are starting to ask the question, why? I mean, I think about the Mind Institute of Davis. I know it's not everywhere, but increasingly, it seems like doctors are doing that so you're not unique. Just rare. Meaning that it's not that your point of view is unique to you. It's unique to a slice of the medical community that is trying to advance the cause of both researching to find the why and providing solutions to the why. Would that be accurate to say? It's not unique, but it's rare. It's still rare to find doctors that are looking holistically at the experience of having special needs and not just taking care of the conventional human needs, but also as Patch Adams said, looking at the patient as a human being and saying, if this was my child, I would want answers to questions. And even when you don't have answers to questions, I know for me as a parent, I have great doctors at all levels and you've helped us tremendously. But the thing that helps me is not whether a doctor has the answer, but whether or not they recognize that I need an answer. They might not be able to give the answer, but that's a form of empathy. So would you say that there are groups that are outstanding and working hard to try to embrace this mindset? Cause I know Boston Children's is on the forefront of doing a lot of work. I've been in contact with them before about communication for autism. They have a bit of an autism center. So it seems like you're starting to get a growing trend of people that are trying to advance medicine, dare we say, into the 21st century.
Dr. Dave Traver:Absolutely. I would agree. And my statements are not meant to be comprehensive and sweeping and in every respect. I do believe that there's a growing movement, a deepening appreciation by healthcare professionals, and systems, the systems in general for looking deeper, whether it's research, performing studies, trying to open up integrative health clinics in their system. So yes to that. Having said that, I think there still remains a sizeable and often discouraging amount of inertia in the traditional community first encounter setting where parents of course are going to go to get some of these questions addressed or investigation started. Um, the average doctor unfortunately in our day tends to have on the average 10 minutes per appointment.
Russ Ewell:Wow.
Dr. Dave Traver:And that's typically in the settings I worked. And that's about average.
Cameron Straw:Is that, can I ask is, is that one of the reasons you started a private practice to enable you to be able to take more of an individualized approach and spend the time needed? I know you said it used to be a few days even just for the evaluation. Maybe you could speak to that and just I guess the standard of care compared to I guess what a family with a special needs child would need from a doctor.
Dr. Dave Traver:I'm happy to do that. And that's an excellent question, Cam. It is virtually impossible to engage an informative and a well-communicated encounter in my opinion with a family of the kind that we're discussing here in under half an hour. And I didn't know that. I just started a practice because I knew I was going to end up looking into translational medicine.
Russ Ewell:What is translational medicine?
Dr. Dave Traver:So translational medicine, sorry, it's a term that is thrown out there that to make a long story short is the endeavor. And some of the academic centers- Temple university I believe in Philadelphia has a translational medicine division. They really do their best to make incarnate some of the therapies, the medications, the interventions, whatever they may be, the testing available to the patients that come to them that are not going to be necessarily available on a community first encounter level. And you are able to do that based on some level of study and evidence. They don't just obviously choose something out of the air, but they reach into the library of studies, the evidence-based literature if you will. An example would be, methyl B12 which is used for children with autism. It's a form of B12, vitamin B12, and it's clearly not available in your average doctor's office, by a primary care doctor. If a mother goes, I'd like some, I've heard about this, can you write a prescription for this? Especially if it's injection. This is a vitamin, you can get it on the internet with, you know, oral or other kinds of preparations. But for injections, you need a prescription and they're not gonna really know what that means. So a translational approach would be to look at the studies that have been performed by various academic institutions. Look at the risk benefit ratio. Look at the patient population they studied and see if you can make incarnate, translate that into the person who is sitting in front of you. And that's what I do.
Russ Ewell:You know the number that stuck out to me is that the typical doctor has about 10 minutes to see someone and then you're saying that when you're dealing with a family with special needs, and I actually think that probably expands to not just special needs disability, but unique needs of just human beings. It seems like you see it all the time. Someone who's sick, no one can figure out why they're sick and they have to be sent to a different hospital where there are doctors who actually know how to figure that out. But let's just just stick with that initial point. You May. I think what you're trying to say then about medicine is that when a special needs family goes to look for a doctor, they're going to have to understand that they have to, if they want the best quality care, all doctors are great, but if they want the best quality care and their situation, they're going to be looking for someone who's somewhat rare and the first step is someone who has at least 30 minutes to spend with them to, because you're saying it takes that much time to comprehend their situation. You can do tests, but you also have to see face to face and so if they're searching, if you're out there searching, I think what Dr Traver is saying is, is that if, if your doctor doesn't have time for you, that's the first thing you've got to start to reevaluate. You have to have someone who has time for you and it may be frustrating to find someone like that, but it sounds like maybe they can get out there and start looking in saying, okay, who are some people who practice what translational medicine is that? Would that be a way to get started or are there other ways to get started in trying to figure out how do I find that doctor that will have the time and look at this holistically or comprehensively?
Dr. Dave Traver:Right. I was going to ask you, yeah. Like how, how could you help someone navigate who's looking to find the various practitioners or, because there's just
Speaker 5:a sea of it. I'm, I'm picturing someone going on their computer googling, you know, a doctor for special needs child and you know, they're going to get Yelp reviews maybe and all these different things. But like is there identifying characteristics or credentials, I know you're talking about translational medicine as he was referring to, but I know functional practitioners are out there and various doctors with, with specialties as you are. Um, yeah. How do they, how do they start?
Dr. Dave Traver:There are layered levels of criteria in my mind that I share with parents, which I endorse as very serious considerations when they go on the hunt. Some of them on patients who may, may move to another part of the United States. Right. And the very first question is, what am I going to do now? Number one, I always tell my parents, you are never trapped. You are not cornered. And you need to remember that especially in our day and age, there are resources out to help you. I don't care where you are, maybe, maybe not in Antarctica, but pretty much everywhere else, right? By default or by deliberation. One of the most commonly used ways to find a good doctor will use that word. Good doctor is by word of mouth. Most referrals are made by parents who say, go to this woman, this man, whoever they are, whether academically located or whether it's a sub specialist for an issue with an autistic child or special needs adult. Uh, whether they're an academic center, whether they're private practice or whether they're who, whatever, wherever they are, that person's who you want to get to. When you have personal interaction with another human being, you derive an indescribable, uh, amount more than just data. You really understand what they're saying and you understand what they've gone through. And most of my parents have connected with other parents in that regard. Somehow. Some way. Um, family, friends, neighbors, coworkers. That's one of the most common ways people at least come to us. Uh, the second is, um, often through a person's participation in conferences. Uh, I personally don't want to send individuals to anybody who is not, um, uh, engaged in aggressive, ongoing research. Um, I don't want to send people to a professionals who have settled. I don't think we have the privilege of settling. We do not know the answers. So we do not have the privilege or luxury of saying this is, this is what is, all we can say is this is what appears to be and you keep moving and you stay humble and hungry. That's my personal,
Speaker 5:so you're saying some, a doctor who's staying on top of the research, who's always innovating as we were speaking to before, they're not practicing what they were practicing in the 80s. That's the same as they're doing today.
Dr. Dave Traver:That's correct. I think that things are always changing. Every year things are changing. And one of the greatest groundswells from which this information arrives is my parents. My parents are always telling me things I don't either know period or I've heard vaguely a little bit about and I'm, I'm then kind of, you know, told, let's go to school after this. What do you think? And I, I go after, you know, do some research, go down that rabbit hole if you will. Um, so I think that's important and that's why I think attending research conferences, if, if there is, if you're in a city listening to this and there are academic centers even remotely near you, you should be aware of who's involved and the kind of doctors that go there because you want at least some, hopefully doctors to be aware of that kind of of information. The third and final thing is, is I would say, um, uh, doctors who are, uh, obviously not just board certified but have been, um, doing this for some period of time. Because outside, you don't want somebody who's just new because, well, for obvious reasons they may be very well intended. I think they probably can have their own strengths, but you, you're going to probably be as a parent, be privy to amount an amount of information that can intimidate even the best physician and you'll want somebody to be able to respond to that, uh, with some level of historical perspective. And
Russ Ewell:so it sounds like, um, what you're talking about is people have to take advantage of some of the social media options as opposed to doing a search on Google, finding parents support groups online where they can go and they can ask a question, hey, I have a child who has downs syndrome or I have a child who has autism. And then the other parents can say, here's the doctor that I see, or here's some, here's a clinic in the area as opposed to just doing a straight Google search. You can do a straight Google search. Uh, but it's, it's really better to get to, to parent other parents. And, um, I, I think what you said about, uh, people staying, uh, you said, uh, the, the best doctors, I guess the appropriate doctor, the one that you're looking for stays up to date on research. Um, and the doctors who do the research are more, more willing to listen sometimes because they're still in the, you said something really cool, they're still humble and hungry. They still have a humility to know that the human body is beyond the understanding of any one person or one period of time and they're, they're hungry to know. Uh, and by implication, like any profession, you saying people can get tired and you don't wanna you don't wanna you don't want a person whose mind and heart is tired of looking because that's kind of medical care you're going to get. So when we look around, if you're out there and your parents like me, when I listen to Dr Dave, I'm, I'm, I'm understanding and, and let me just make a point. If you want to find a doctor, Traver ww dot. A D P t md.com, www dot d p. T m. D. That comm is his site. Or you can just do a search for Dr Dave Traver. Uh, I believe your practices in foster city, but as we're looking at this, it seems like, and I've got a lot of cool ideas from a reference I go to a lot, the friendship circle, they have an article called the 20 tips planning doctor visits. And one of the things they talked about and some other groups talked about was that a doctor should be willing and welcoming. A, you should look at the size of the practice, accessibility to the doctor. You've talked about that capable of helping the overwhelmed, capable of helping those who are, who are, you've kind of addressed that, uh, in a convenient location. I know that from my own perspective, if you have to train to travel or land and sea to get to your doctor, you're going to go less than it's going to be more difficult. Um, and in off office environments, that warm, comforting, sensory sensitive and convenient. When you look at those and you think about those, uh, which ones do you think, uh, would be, uh, of the highest order for you to pick two and say, I would say, you know, you need a doctor who's willing more accessible or are capable of helping people who are overwhelmed. And by that I mean, you said something really cool in helping your patients that are overwhelmed. You said when a patient is going to move to another area and leave you, you say you tell them they're not trapped. And to me that's what it means to help someone's overwhelmed telling them they're not trapped. And some people, you don't want to give people too much hope because they'll start thinking the impossible is possible. I don't think that's about giving people too much hope. It's about relieving them of the strain of hopelessness and giving them an idea that there's somebody somewhere who can help you. But are there any of those that you would say, even as a doctor, he's been highly successful in pediatrics and in working with children with autism, if there's a doctor, they'll say listening, is there something you would say, Hey, this, if you really want to make a difference in this community and in medicine in general, here are a couple of things that I think you want to be and do in your practice.
Dr. Dave Traver:Without doubt, you obviously it's an, it's unspoken that you're assuming that person you go to should be competent. So I'm not going to list that as one of the my responses to your question, which I think is very good. Um, what that is the foundation of unspoken, um, you know, uh, agreement. The thing that strikes me as arguably the most valuable asset for any doctor that a family would choose is there, is there proactive willingness and um, they are not bounded by, this is what I do. I'm not gonna do anymore. That doesn't mean they do everything. It means that they are willing to listen and they're willing to try to help you find the answers. If that means being referred to somebody else, that's fine, that we don't expect everybody to do everything. But I think that there are many, it's very easy in this day and age, even in the realm of functional medicine or alternative medicine or um, holistic approaches to there's these, the conditions that are brought to our doors are very complicated and complex. They are not simple one and done kinds of conditions. And so it's very, it's the rule and not the exception that most people bring with them an unspoken expectation that they are going to get everything basically addressed in some way, shape or form. And that's probably not realistic. However, rather than saying, no, I don't do this, I didn't do that. We don't have time for that. Letting them know, I recognize that I'm not leaving you. We're going to deal with that. But here's where I would deal with first and letting them know that you are available, you are accessible. Um, there are big names out there in this field, names that are very popular and I'm, I'm not against the name. I think that that's irrelevant in some ways. But what I can get disturbed by are families who have come to me with at least their descriptive that, um, I went to this place or that individual because I heard they were the best, or they're the leaders or whatever. And we didn't even see that person. We saw their, you know, secretary somebody, you know, in their office and we're, you know, we're charged more than we thought. And obviously that's, that's uncomfortable in every, every respect. But for me as a physician, um, there's a great deal of trust that parents give us. And I think that's, that's very sacred. And I think you have to deal with that and you are responsible to do the very best you can. You obviously have to be candid and if you can't do certain things, that's okay, but at the same time, you're not going to try to inadvertently or purposely diss them just because you're, you know, you're not the Jack of all trades. I think that's something that I, I'm not, maybe I'm not making myself clear. I think you need to find a doctor who is going to always be willing to go the second and third mile if they can. And that may not be, you'd get five hours of an appointment in 20 minutes, but it does mean that there's a communication, there's relationship, there's a level of trust and there's an investment in your child or your adult that is very evident and that is being executed through the right kind of testing and, and communication. And the one thing I actually request my patients to do is to communicate with me. The average thing we are taught in general by default is, you know, you can't communicate with everybody. And that's true. But I think that most of my parents need that level of communication to be able to, uh, at least, um, share some of the things that are going through that are of, of real substance. I don't want to see them in three months and find out that the child was in the hospital, right. Without me knowing that kind of thing. One of the things I think that is interesting and we're talking a lot about medicine. I'm going to get Cameron and remind me about, cause you've built an extraordinary network because I've watched you build
Russ Ewell:it of doctors, therapists, um, people that specialize in the psychiatric realm, people who specialize in Nutri. You've got an extraordinary network, which I think allows you to do some unique things. And maybe we want to talk about that in a minute, but Karen can remind, remind me to talk about it. But I just want to say a word for parents. It's very emotional when you go to the doctor and it's extreme. I've fainted before when, when at at the doctor's office, uh, there's so much stress when you hear things like, or your child has to be hospitalized or you hear that surgery has got to take place because you're as a parent, oftentimes you're so protective of your child. And by that I don't mean protective. Like you're just, you know, over bearing. But you know, the fragile nature of a life that's facing the multiple challenges of having a disability in a world that does not always understand, uh, the depth of that challenge. Uh, so one of the things I try to do when I go to doctors is, is to not get angry and upset with them because they can't provide the answers I'm looking for. And I, I've seen before where parents who are in this fight and all of them are, I've never met a parent of a special needs kid, wasn't awesome. They're in the fight, but you get fatigued. I know. I do. You, you, my wife and I, we, we, we have to keep up our endurance and we need a great support group to help do it. But sometimes I've seen situations where parents take out their frustration and their feelings of hopelessness on doctors. And the only thing I'd say about that is we have to always think in these ways. And this is how I was taught to think by parents who proceeded me and the life journey of a disability. I met parents who fortunately helped me balance my emotions because if you turn a doctor off, you can go in to a doctor who's willing, maybe not able yet, but wants to learn. And that frustration can make him or her say, I will never see another special needs kid again. I've talked to doctors like that because they don't want to have to go through it. And so it's a really difficult challenge, but we have to always do is stay calm and recognize when, okay, this person can't help me and if they can't help me then we move on. And yet it's frustrating. I've driven that far, done all the insurance prep. Uh, you know, I've done it, we've done it with our son. We were getting oral surgery for one of our kids and one of the oral surgeons. I'm telling you, boy I, when I was here, I was like, I don't want any human being. I know to ever go there. I'm not, I didn't say that to her. And I didn't gentleman down and I said, thank you. And we left because I want her to see the next kid or adult with special needs and think, yeah, yeah, yeah, I want to do this. And so you sort of have a have responsibilities of parents. Special needs to think about what is the impression I'm leaving on the medical community and in can I encourage more doctors to want to see more special needs kids, more doctors to want to learn. Because you know, I'm sympathetic. If you're a doctor and everybody thinks doctors are rich, but if you're a, and I know a number of them are, but if you're a doctor, you've got a boatload of loans. You probably went into this because you wanted to help people, you wanted to heal people. And many times you're being told how much time you get for a patient. And it's a very daring thing to be in a private practice today from a financial point of view. And, and so I think we have to have a little bit of empathy on the doctors. It may sound crazy, but we have to have a little empathy on the doctor to understand where they're coming from. And I think that ultimately, and this is a question I'm Cameron may want to jump in on this question, but before we get to networks, alternately, Dave, maybe you can give people a couple of tips about how to build the right kind of relationship with a doctor because not every doctor comes to the table with the social skills that you have, uh, or the experience background, Stanford International Care, Boston, a university, Boston city. You've got a nice, a nice set of experiences that make you socially able. But maybe some parents can get a couple of tests, maybe one or two tips about how do I build a relationship with my doctor and let them grow alongside us instead of want perfection right away. Because then the town you may not find perfection.
Dr. Dave Traver:That's, that's a big question with a lot of, um, a lot of volume, uh, that probably needs to be attached to it. But to try out of out of respect for time and directness, I think that, um, being able to go in and know that the doctors, giving them the benefit of the doubt that they're doing their best, they can. Um, if a doctor has limitations, myself included, it doesn't make them a bad person. It just means that's where they are. And they first and foremost we say this, but we often don't translate this into our emotions. They are just a person and they're just trying to do the best they can to make it through there. You could be patient number 15 that morning. Um, they, with you as a parent, being able to share with them, I know you have a certain amount of time or respect that and communicating a sensitivity to that will give them, I think the, the, the expansion they need to be able to go, what, let me see what I can do. And without parents who, I don't think parents necessarily buy it as a rule, go in with the demands. Some do. That's not the best. Um, I think doctors don't want to feel used. Like, this is what I'm going to use you for. I need these tests or I need these, you know, they, they need to know that there's a reason there's a, there's a relationship. It's not transactional, it's a relationship. And I think that in our current culture, these interactions can tend to be more transactional than they are interactive. So I hope that makes some sense. Totally in the,
Russ Ewell:that's a brilliant, brilliant
Speaker 5:answer. Just a question for both of you guys. Maybe start with urs. Just you spoke to this support group that's so important and I, and I know you've probably experienced that with your patients as well, and just want to know if you could speak to it as something I respect about you and your family, how much support you've, you've put around your kids and in order to, and I'm sure that decreases the burden on you, but also on the practitioner having this kind of network of care. Um, can you speak to that at all? Just how, how maybe you started that or how that came to be for you and when you discovered it and how it's helped your kids? You
Russ Ewell:know, I think, um, that's a great question. I'll try to answer it succinctly. When you have any uniqueness to your life, whether you're an ethnicity, a color, a language, and you're in a community where you are the minority, I think you have to take initiative and you have to, it's difficult because oftentimes, especially in the, in raising children with disabilities and parenting adults with disabilities, you're, you're constantly feeling the, the outsiderness of being different. When you go to a restaurant, when you go to a playground, you're always filling the, it's easy to internalize that and feel rejected before you've even been rejected. And oftentimes what I found is that my job as a parent, especially as children, is to educate. And so instead of getting insecure and upset and internalizing the frustration, I feel like even at the most awkward questions, my job is to educate. And so when my kids were young, uh, and you can listen to our earlier podcast on this, we started at east soccer and the way I did it is I went, I want my kids to have the experience. I had grown up as a simple thing as I did and I had friends. And I think it's why it's important, especially these families not let themselves get isolated. There are lots and lots of people out there. If you will take the time and you will explain what's happening to them, they would be happy to invite your kid to a birthday party. There may be lots that won't, but our job as a parent is to find the ones who will. And so we used to have a lot of parties, Halloween parties still do Christmas parties and we had, we've invited neighbors, my wife's really the great one on this and we've invited neighbors to everything. And what happens, you build up enough friends and they, they, they grow with your child. And I think that creates a support group. So I would encourage parents, and there's more on that. I've written about that on at digital scribbler, ww.digital scribbler.com you can find some articles I've written there about building teams of support, but you have to really be a, you have to fight the temptation to isolate, fight that temptation to feel rejected. And I get the same thing with doctors. I've been to doctors that initially I was like, I don't know how they're going to, they're going to do here. And I, they make me nervous. And by the third time the doctor's awesome because he asked questions like Dave said, they need to be willing to listen and learn. He asks questions. What I love is when the doctors want to communicate with my child and not just with me and they don't assume my child can't communicate or won't communicate well. They just want some kind of connection with them. And so to me, we talk more about it, but I think it's really taking initiative and that can be hard for people, but the initiative you take and the friendships you build will be the foundation of the support system you have. And unfortunately you can't just depend on immediate family because everybody starts to get worn down. So the more people you have in that support system, the better you do. And we'll have to talk more about that. But Dave allowed lounge,
Dr. Dave Traver:well, I, this may seem a little bit distant, but it's not meant to be. I think that my son who is now 21 and a entering senior at his university was exposed to a fully inclusive programs for children with or typical and children who have special needs. Uh, maybe he was five or six. I don't know. I, I'm ballparking at that. And whether it was a soccer program, whether it was school, whether it was different kind of groups, situations, um, that were even therapeutic and he was helping out in and participating in, he learned an a, a set of invaluable lessons that didn't make him just smarter. But I will tell you that my son has learned and has become a different person because I'm trying to make a point that when you're involved with other individuals who are different than you, you benefit. That's true. You may not have a certain need, but you have a need that you don't, you're not aware of yet. And that need only becomes apparent after you have interacted with that other individual. And it's a privilege. And I think for any listener here, I am vigorously arguing that people who are involved with individuals who have special needs are themselves benefiting. This is not altruism, this is not charity. This is bonafide benefit. And one of the things that has happened with my son is he is now doing research and autism at his university. And I have very little doubt that this decision for him and for him to enter the field of neuroscience, which is what he's on the threshold of doing, uh, has nothing to do with what I just mentioned. I absolutely believe that he's impassioned. He has some of his best friends have special needs. And um, someone asked me, well Dave, they said, do you have, what made you go into this? Do you have special needs kids? And that's an understandable question. I think it's a little bit limiting. And I said, well, let me respond by saying
Russ Ewell:I have kids and they're very special. So they are special needs and they're very needy. So yes, I have special needs kids, but I think we try to, we try to silo people and I think that our involvement with these individuals, with other people who become our family is not an issue of integration or are doing something good. It's, it's about life. This is who we are, this is who we must become, this is who we were meant to be. And I think the benefits are in every direction. So I hope that wasn't too far off the mark. No, I think it was totally great. You know what we're learning, we're learning that there's a lot to talk about when it comes to finding a special needs doctor. And A, we're going to have to get you on again, maybe a in the future so that we can talk about the subject. I alluded to networking because the network you built is incredible and I think it allows you to meet needs without you doing all that needs to be done. But I, I just want to recap for some of the parents, uh, some of the things we've talked about today. Uh, just remember when you're out there, I love what Dr Traver said. You're not trapped, you're not trapped. And, and there are solutions. And I know in our family we've had to work sometimes extremely hard. I should say. My wife's worked extremely hard and I watched her work. Uh, we had to work extremely hard to find those, uh, solutions, but you're not trapped. And we're gonna try our best to get additional guests to join Dr Traver and maybe we'll have a Dr Traver show that we'll just do once a month and bring along folks so he can help you out and figuring out who you can work with, especially as doctor, I think it's got a lot to teach us all about how medicine works. And, uh, we won't get as much into treatments probably in specifics, but we'll talk about some of them you can check out in the weeks, months ahead. Uh, just remember, you need to always consult your doctor. This is not a medical show. This is more of a giving you tips. I want to highlight a couple of things before we go friendship circle that 20 tips for planning a doctor's visit. Really a tremendous, tremendous article there that has been written about how to select the right day, uh, what to do beforehand and get everything working smoothly. I think a lot of you, uh, will enjoy that. Uh, and uh, and then I want to just get a, as we close out, um, a thought from Cameron, a thought from Dave and then I'll close this out. Just what would you like to leave, uh, particularly parents with before you go, I know some of this is new to you, Cameron is your, uh, beginning your journey. What would you like, what would you like to say? Boy, I really want to highlight this for parents and Dr Traver. What do you want to highlight for parents? And then we'll close. That's been really enjoyable. I was paying so much attention. I think my brain hurts from all that you were telling us, Dave.
Speaker 5:Well, yeah, I can, I could say, uh, this has been a great conversation. I really appreciate the both of you bringing me on the show. I think, um, the thing I would like to leave parents with is something you both were speaking to as far as finding the right practitioner I think is so important. Someone that I've actually have chronic health challenges myself, uh, since you know, my early childhood. And so I've seen many, many practitioners in, in something and I've had to be my own advocate. And so I would say, you know, definitely be your own advocate and you know, don't take no for an answer until cause someone does have the answers for you. And uh, you know, there's great doctors out there like Dr Dave Traver who do stay abreast of the research, who are going to fight for you and your family and your kid. And so don't give up looking. Um, because there are some amazing practitioners and we are a little spoiled in here in the bay area. So especially if you're out of here, there should be someone, but there's, there's like, like Russ was saying, you aren't never trapped. I think that's going to be the quote of the day.
Dr. Dave Traver:Well, I'll echo cam and I first want to say thank you again, uh, also for having me on the show. It's a privilege and a, it's always, um, it's a learning experience. It's, it's a wonderful to be here, so thank you. Um, I think that in closing I would, I always say the same thing to my parents and I mean it as potently today as I did when I first began my practice. There was always hope and it is never too late to help your loved one adult child, relative, friend, coworker, um, the answers are out there. We have to find them. That is a conviction, not an emotion. And if, if we expect benefit without struggle, we're not being realistic and, uh, you can't get free without a struggle. Um, that's not my quote. That's Frederick Douglas, but I believe in it and I believe that every single thing we do is worth it. And um, there's always hope. So thank you very much.
Russ Ewell:It's been great to have you, Dr Traver. Great to have you. Cameron. The, this is me podcast, which takes our theme from the greatest showman in the song. This is me. I'm not a stranger to the dark hideaway. They say, cause we don't want your broken parts. I've learned to be ashamed of all my scars run away. They say, no one, I love you as you are, but I won't let them break me down to dust. I know that there's a place for us for we are glorious. We believe here at the, this is me podcast, that there's a place for every single child and adult with special needs in the medical community, in all parts of our community, and we'll come, keep advocating and encouraging everyone out there to listen, learn, and grow as we grow together. Again, thanks to everybody for a great podcast. We'll see it in a week or so.
Speaker 2:[inaudible][inaudible].