On and Off The Spectrum
How do families react, respond and reorganize after receiving a potentially life altering physical or mental health diagnosis, either for themselves or for someone they love? Dr. Esther Hess and Dr. Ann Kirsch, two experienced and well-known psychotherapists offer strategies, guidance and realistic hope through some of the toughest times that families can face.
On and Off The Spectrum
Podiatry for the special needs community
Use Left/Right to seek, Home/End to jump to start or end. Hold shift to jump forward or backward.
Dr. Estie Hess met with Dr. Mary Schuh-Clark, who described her volunteer activities as a podiatrist for the Southern California Special Olympics. The discussion let to how clinical staff are better prepared for working with a neuro-diverse population and how parents are equally helped to understand the sensory sensitivities of their children with guidance as to the best way to prepare the special needs individual for medical examination and follow up care.
Stay in touch!
This podcast is a conversation, and we’d love to hear from you. If you have questions, topics you’d like us to explore, or are interested in being a guest on a future episode, email us at onandoffthespectrumpodcast@gmail.com
Music
Composer / Writer / Author: ROSSANO GENTILI - SIAE IPI: 161539866
Good evening, everyone. How are you? I'm Dr. Estee Hess, and this is another episode of On and Off the Spectrum Podcast. Tonight you'll notice that I'm doing this solo. My dear friend and colleague, Dr. Ann Kirsch, is under the weather, and she gave me the green light to say, please go ahead, because we have a very special guest that she'd like to make sure that I would interview this evening. So without further ado, we have Mary Shu Clark, who is a podiatrist in your, I guess, your day profession, but you uh then go ahead and volunteer in a very, very interesting place. You volunteer for the Special Olympics. And uh I think you actually met my husband originally, and he was the one who said uh that that you needed to be on the podcast because I think, first off, I'm not sure if people fully understand uh what a podiatrist does that might be different from, say, an orthopedist, um uh you know, in terms of like, aren't all foot doctors alike? How is it also um when you need to modify your uh procedures for, for example, um special needs individuals who might have certain sensitivities, and even more so when these uh neurodiverse individuals also happen to be elite athletes. So without further ado, I'm really happy to meet you, Mary, and thank you for being on our show tonight.
SPEAKER_00Well, thank you for having me. I I really appreciated the the reach out. I think it's great. And I'm I am such a big fan of Special Olympics. It's one of the reasons I volunteer for them. Um, is I just think they are an outstanding program, and um they just celebrated a big anniversary, but it's it's a program that's been going for a number of years, and our Southern California, or we call it SoCal Special Olympics Group, is an absolute fabulous organization. Um, they run two huge events each year. One is the fall games and the other is the summer games. Uh win, so one is like winter and the other summer. And um these events are held where multiple uh teams come from all over basically the southern half of the state of California. In smaller states, Special Olympics will have their their fall games and their and their summer games as one thing for the whole state. But because California is such a large state, it's held as two, um, one one in the north and one in the south. But they're a huge event, and we screen over a thousand um athletes in a given year. So we're we're screening um the athletes as part so there's a part of Special Olympics called Healthy Athletes, and it's designed to help uh Special Olympians and their families um to basically stay healthy. And we know that patients with intellectual disabilities are not given very often the same kind of treatment when they are in the medical profession. And sometimes it is, you know, the evil of schedules and in the doctor world now where it's you have to see so many people a day to you know keep the lights on, that if you have somebody who has special needs, having that time to see them can be really difficult. And in a very busy practice, especially with, say, someone who's on the spectrum, the more severe they are, the more difficult they may difficulty they may have with a typical doctor's office nowadays where the patient is brought in, they're seen, the waiting room may be busy, the office staff is buzzing about, and all of that can be too much stimulation. And also typically in a medical office, because we want to see what we're doing really well, we'll have very bright lights, and so that can be distracting. Um and and for patients and their families, sometimes that can be a little overwhelming. So, one of the things the Special Olympics did is they set up sort of like a little village of different health professions that come and screen uh their athletes, and um so fit the for the foot screening, which is called Fit Feet, we do screenings and it also helps in that we get student and resident volunteers from the nearby podiatry college to come. And so they come and volunteer, and it gives them an opportunity to work with the intellectually disabled and get experience in a very non-threatening, very you know, positive and upbeat environment. But it allows them to learn how to put their skills that they're learning to use, such as you know, learning to examine feet and skin, and learning uh to do a gate analysis, like watching um the participants you know walk on a mat and see how they walk and how that changes, what kind of shoes they need, what kind of socks they need, um, and and but also having that one-to-one interaction where many of the students um because they're you know in high school and then in college, the best and the brightest because they're going off to some kind of a medical school, um, they often don't interact, even if they're if they went to a school that mainstreamed the intellectually disabled uh students or the developmentally disabled students, they may still not have interacted with them because they may have been in all those like collegiate tracked courses that those other students wouldn't be in. So very often they have very little interaction unless there's somebody in their family or their neighbor with people that are going to become their, you know, their patients someday.
SPEAKER_02So, what you're saying is that the special Olympic opportunities actually give not only for the participant to get decent care as elite athletes who have sensitivities that need to be addressed in terms of being the best that they can be in terms of what they're going to be in their particular area of sports expertise. But the physicians who might not otherwise have the experience will get to be exposed to this population in their very thoughtful way. And I think that's terrific because I know I teach at the medical school at UCLA, and I have had a lot of students who really don't have a lot of exposure to the special needs community except for perhaps a week within their medical school training. And so similar, similar thinking uh that you pointed out in terms of the challenges and the obstacles. But here is an opportunity in this con in this wonderful, and I keep saying elite environment because you're seeing the best of the best in the context of okay, special needs, but you know, for the idea that this is indeed an Olympic event, and yet this is so so much. Um I'm hearing so many different levels and layers to the understanding of how you're actually helping both the student and the clinical population.
SPEAKER_00Absolutely. It gives us, you know, many of these students have never interacted with somebody who is either intellectually disabled, developmentally disabled, physically disabled. You know, one of the things is we see quite a bit of pathology of, you know, physical pathology, contractures and you know, uh participants that have cerebral palsy or participants that have Down syndrome or a number of uh different things. And so they get to see real pathology of what's going on, and and some of these particular disorders have very specific foot pathologies. So it gives them experience seeing that, but also gives them experience understanding that these are human beings and people that have personalities and you know have hopes and dreams and everything else. And you know, when they're coming, some of the participants will come off of they'll come to the screenings after they participated in their sport, some come before, like their their sport is has done. But you know, they're some of them are coming with their medals, wearing their medals from their from their sport. So it's really great because it allows the students and the residents to, you know, understand kind of the level of of this person. And I I know we had um one person recently who had gone on to national games, and we had somebody that we were screening that had gone to the international games because you know, just like the real Olympics, the Special Olympics has a national competition, and then if you win at nationals, you go on to the international competition.
SPEAKER_01Sure, sure.
SPEAKER_00And and so one of the students said to me, you know, they told me they were in Europe, and I said, Yeah, because they that's how good they are at their sport. They got to go to the, you know, they won the state, they went on to nationals and and so on.
SPEAKER_02So I'm gonna interrupt you for just for just a minute, Mary, because I also know that we're making an assumption that the viewer audience, as I mentioned earlier, uh, might have knowledge about what a podiatrist actually does. And I think that there's a general confusion. You are a doctor of uh of uh podiatry, and um and so what is the difference between, say, a podiatrist and an orthopedist? How did you get into the field? And then what drew you to the Special Olympics you know model just in the first place?
SPEAKER_00Okay, so um my degree formally says doctor of podiatric medicine, and to become a podiatrist, you do four years of undergraduate and then four years of podiatric medical school. Our medical school model is based on the same model that MD and DO schools are, and then there are certain things that we do different. In other words, we take biomechanics. Um, the amount we spend on teeth is, you know, you have 32 go see a dentist kind of thing. But that allows us to then spend time on things like biomechanics and orthotics, um, that an MD or a DO really doesn't spend time on. So we specialize and then we do three years of residency. Um so that three years of residency includes podiatric surgery as well as podiatric medicine. And um we treat both the foot and ankle, so our our degree is the foot and ankle and the soft tissues attached there too. So if it can be doing everything from ankle fractures, a lot of podiatrists are very involved in wound care and in diabetic limb salvage and diabetic foot care because that is such a big thing now, and it's it's such an expensive um problem and so life-changing when patients get diabetic foot ulcers. So and how would that be different in terms of distinguishing between an orthopedist and so an orthopedist would have gone to medical school, either MD or DO type school. Okay, so with either DO is doctor of osteopathic medicine, and then MD is medical doctor. So they may have gone to gone to four years of that type of school, and then they would go on and do one year of internship, which is sort of like um internal medicine, family medicine, kind of their first year, and then they do residency after that. So for an orthopedist, they'll do the general orthopedics um residency, and I believe they actually start with like a surgical rotation and then go on to orthopedics. And then if they were, say, a foot and ankle orthopedist, after they do all these general things like learning shoulders and hips and knees, then they do one year specifically focused on um foot and ankle. So our three-year focused on foot and ankle is a little different because we we're we're not learning hips and knees and shoulders in in the sense of how to do surgery on that. We go directly. How I got into this was I wanted to teach people how to walk or have people be able to walk better. And I was noticing how much people who could or couldn't walk, how it impacted their life. And it started because many years before I ever went to podiatry podiatric medical school, um, I was a volunteer for a program that taught disabled kids to horseback ride. And it's called hippotherapy, and most people don't realize that's the you know the technical term, but and I saw the difference for I had one particular gal that she had spina bifida and had been in a wheelchair all her life. And when we first started our riding program, we were inside of a ring, and then we moved to a different ranch that had trails. They had a ring, but they also had little trails. Um, and where I grew up in upstate New York is very wooded and very hilly and very mountainous. So there's a lot of people who hike, and everybody's been on a trail. And this young girl said to me, I'd like to go on the trail. And I said, We can do that. And she says, I've never been on a trail in my life, and she was 16 years old, and that just kind of was such a shock to me because I didn't know anybody who hadn't been on a trail by the time they were about four. So the idea that somebody had grown up in this area that was full of trails and full of woods who'd never been in the woods and never been on a trail just really kind of blew my mind. So we took her on this little trail and she was so excited and had such a great time. And it just made me realize, you know, that horse and his legs took her to a place her wheelchair couldn't go. Yes. And so it really kind of opened up to me the idea of how just being able to walk somewhere changes your life, and how not being able to walk somewhere changes your life. Um, and then eventually I became so sort of interested in that that I looked at going back to school to help people walk, and next thing I knew, I was, you know, headed to the Dr. William M. Phil College of Bodiatric Medicine.
SPEAKER_02I I love it because, you know, and there's a you know, being on the autism spectrum, for example, which is my specialty, that's a wide range of capacities. So you have those who um have uh cognitive impairments, you have also who have people who are quite brilliant on the spectrum. It's one big, big um uh canvas, you know. I guess the expression is you've seen one person with autism, you've seen exactly one person with autism. Um but I know, for example, that I've worked with many, many uh of my kiddos who have such um significant sensory issues, and many could hardly keep shoes on. Uh you know, I have uh one fond memory of a young boy. I finally got him to wear Ug boots uh 24-7, 365 days of the year, because that was the only shoe that he could tolerate on his foot. And um uh you know, there's actually a sidebar on that because he also had a hard time just wearing clothes, and so he could tolerate the one-footed uh pajamas that you know, if you go on Amazon, you can get them in all uh up through it in all sizes, and so he would have put on this pajama, it didn't matter the temperature outside with his Ug boots, and then he would dress you know accordingly on top. But that's his uniform, that was his uniform, and these Ug boots were such a significant part. I was invited to his graduation from high school, I'd seen him for years, and he's going down the aisle in his Ug boots because that was still the only shoe that he could wear, but we found something that was socially acceptable, both for his own sensitivities and for society as a whole. And I was wondering if that's also part of the education that you give to parents and to be able to do that.
SPEAKER_00Absolutely. So some sometimes we'll have um, especially younger kids who are toe walkers, and the parents sometimes are very distressed about the fact that their child is toe walking, and now there are there are medical reasons such as a very tight Achilles tendon that can cause a toe walker, but for some it's it is actually a sensory issue. They don't like their feet touching the ground, and so they have the least amount of foot touching the ground as possible, and that's a toe walker. So, so sometimes we have to just through our exam and um you know gain analysis and things like that, we have to figure out why they are toe walking. And I have had to walkers where it was it was only a sensory issue, and so um one mom said to me, he walks normally on the carpet, but he won't walk normally in the kitchen or the bathroom. And I instantly said, kitchen and bathroom tile, and she was like, How'd you know? And I said, He doesn't like something hard, you're gonna need to have something really soft and cushy. So even in the bathroom, so they put in um uh a runner type rug in their bathroom so he could come in the door and get to the sink and get to the toilet and get to the shower on the runner and be off the tile, and the heels came down. So that looks seems so easy. And socks, yes, and socks can also be a very big thing, and how high the socks come up can be a very sensory uh issue. Our treatment rooms can sometimes be a sensory issue. So um sometimes just sitting in the big treatment chair, our chairs resemble slightly dental chairs. And so if they've been to a dentist and had a not happy experience, sure, they walk in the room and they see something that reminds them of a place that wasn't happy and they want to turn around and walk right back out. And so, and so we have to, you know, sometimes explain to them that you know, this isn't a dentist office and we're just gonna look at their feet. And because many children, you know, most children go through a vaccination period, their idea of a doctor is I'm gonna go to the doctor and I'm gonna get poked. And so the other thing as a podiatrist is the amount of poking we're doing on with like an injection for kids is actually not that common unless they have an ingrown toenail that we're trying to treat. But for so much of what we're doing, it's biomechanics where we're measuring angles and motion and things like that, and we're watching them walk or watching them jog or run, which is very different than their experience of other doctors. So we often have to say to them and to the parents, this is going to be different than your usual doctor visit because what we're doing is different.
SPEAKER_01Right.
SPEAKER_00And and so giving them that even that little heads up when we first, you know, encounter them. The other thing is if we know that they need more time, you know, some parents have kids that melt down very quickly and you know, very loudly. And, you know, in a in a practice, that can be really disruptive. If we know that ahead, if the mom calls us and says, Look, you know, my my child just doesn't have a lot of patience, we can say, you know what, let's put you at this time of the day, or what's the best time of the day for your child to come and let's work around that, or maybe we make them the first child of the day so there's nobody in the waiting room, right?
SPEAKER_02So really what I'm hearing is that this isn't simply about volunteering in an Olympic type of arena. This is really sensitizing the community to how to do medicine for a child who is neurodiverse.
SPEAKER_00Yes, yes, or or have even just a child who has physical disabilities and and because how a child deals with their physical disabilities very often different than how an adult deals with it. Yeah, and and so it's it's giving them the space to be who they are, and then us finding a way to make them the best who they are they can be, right?
SPEAKER_02I love that. I love that phrase, being the best that they can be. You know, it's very funny because um I suddenly became an expert in seamless socks when I had to for my for my kiddos, because I had kids who, you know, this where it's we're at the time of the year now where kids are starting to go back to school. So there is that uniform that they have to wear, and there is the socks, and that's as dreaded as as uh anything else. And so I've have worked with parents to help them find seamless socks that can be less of an obstacle for the child because it is what I'm hearing is acknowledging the sensory sensitivities and creating socially appropriate accommodations. Yes, it is everything from the timing of the appointment to how to demystify if even the exam chair resembles a scary experience from the past. That's wonderful.
SPEAKER_00And and really one of the things for you know like parents of of children that either have a physical or um developmental disability or are neurodivergent. One of the things is for the parents to try to make it as you know as best they can and that comes with information of my my kid does best at this time of day, right? If you know that they crash and burn at 2 30, don't make the three o'clock appointment. You know that may be when they get out of school but that's not going to be what's going to work best for the kid, right?
SPEAKER_02And the truth is sometimes, you know, especially if you have multiple kids sometimes it's just really hard to sculpt that kind of perfect time.
unknownYeah.
SPEAKER_02You know, especially if you have multiple children with different kinds of challenges. But if the medical staff knows ahead of time so there could be some kind of accommodation or at least preparation for the job that's coming in so that it's not a surprise rather it's a way to really tell everybody okay let's how do we acknowledge accommodate adapt and affirm this this patient in front of us. That's a wonderful message.
SPEAKER_00Yeah it it it it makes a huge difference. And one of the things I love about Special Olympics is it is such a positive group they are they are so life affirming and so positive health affirming matter of fact I don't know exactly when this started but SoCal Special Olympics have something called power up and power up has a coach online that does a Tuesday night 45 minute exercise that helps them strengthen stretch range of motion to prepare for their sport. So some days he'll coach Max will say okay today we're going to focus on the swimmers so we're going to do you know muscles and and and strengthening and and range of motion for those of our athletes that are swimmers or you know it may be a basketball it may be just a general session. And so the athletes sign up for this um power up coaching they then send the athlete a little bag that has the equipment that's used that Coach Max uses. So it's like a a squeeze ball and a stretchy band um you know a resistance band and a couple other things a timer and a towel and um that way they can participate online from home. So so if they're if they're an athlete through Special Olympics but say they're from you know a family that doesn't have a lot of money right they can't afford to go to a gym and all of that to help train for their sport. And so this is a way they can do it from home from their phone or from um you know their tablet or from their computer and at the same time they're getting healthier and for some kids who really aren't comfortable say being in a team sport it can be an an entry for them to just be getting healthier and doing some you know healthy exercise so so they they offer these kind of programs that and and you know they do have huge team building programs of course but they also offer these programs that can be done at home and basically don't cost them anything. You know they have to have internet connection.
SPEAKER_02And I think again for the special needs community getting out being um getting exercise that's so essential for all of us and doing it in a thoughtful platform is so important. And this I I can't thank you enough because I think you've educated this community here not only in terms of what you do in the context of the of the special needs of these elite athletes but really for all individuals who are who have neurodiverse backgrounds and need to have some special considerations to make sure that their medical experience is a positive one.
SPEAKER_00Absolutely and and for them as elite athletes some of the things that we're doing is you know helping them say if they have bracing or they have orthotics, making sure that this is going to work for their sport, right? Is this the best that we can do to keep them going their very best um or do they have the right shoes for what they're doing? Or are they you know shoes worn out and they need new ones are there we give we actually so one of our things with with spec with Special Olympics is our tent, the fit every tent gives away some kind of giveaway and so ours uh includes a pair of socks and sometimes a pair of a pair of special stretchy laces um that they don't have to tie and so those are very popular. Yeah um and and so sometimes the athletes come and and they're not so thrilled about having their feet screened but they're willing to do that because they want the socks.
SPEAKER_02I see and but again you you know sometimes and that's a good message because that's a life lesson. You may not like the moment but if you can look into the horizon for a moment to see what the prize is at the you know at the end okay I can tolerate almost anything if it's time limited which is a good lesson for all of us in life.
SPEAKER_00Absolutely Dr.
SPEAKER_02Mary I gotta tell you this has been such an unusual pleasure because what started off as a passion for yourself has become such a message of hope and direction for our community. I think it's a matter of sensitizing the medical community as much as possible but also helping families understand that you don't have to be embarrassed when you have a child who has needs. You just have to alert the staff in front of you to say help me so that the experience that my child has not only for now but for the future is a positive one and how lucky we are to have you educate us on this very very thoughtful subject I can't thank you enough for joining us this evening. Oh pleasure this has been another episode of On and Off the Spectrum podcast you know that you can find us on all sorts of social media but if tonight touched your hearts and I hope it did then please follow us tell your friends subscribe and if you yourself like our wonderful Dr. Mary said I can add to the story of this podcast please contact us and let us know how you have a personal story that could really enhance our viewing uh experience so I want to thank you again Mary for tonight's episode and wish everybody a wonderful safe and healthy evening thank you so much for having me I really appreciate it. Absolutely my pleasure take care