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Dental Care and Profound Autism: Inchstones with Dr. Sydnee Chavis · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hi, everyone. Welcome to the Inch Zones podcast. We delve right into it. Today I have a new friend, and I'm gonna say colleague, maybe colleague in life. Cindy Chaves with me today. She is a woman that I met through a very special program called Heroic Public Speaking. And when we realized that our life synergies overlapped, it was like, hello, Cindy, you understand me, I understand you. And not in the same context, but Sydney. Sydney is a dentist by practice and specifically caters and serves the special needs community. And why is that, Sydney? Why do you serve that community?
• 0:35
  Speaker B: Yeah, I serve that community because of my sister who has cerebral palsy and intellectual disabilities. So my big sister Brandy, the oldest of my four siblings. So there are four of us total. I'm the third of four. But Brandy, who is again the oldest of us, has cerebral palsy and intellectual disabilities. It has been the biggest gift of my life having her as a sister, which I didn't recognize was anything different or anything strange or anything out of the ordinary when I was a kid growing up. And the socialization that I acquired as I got older and kind of began to understand the world around me a little bit more was that my family is the one that's a little bit different. Not everybody has a Brandy or a sister with a disability or a special needs. And because of that, I began to see the difficulties that my parents had from a standpoint of meeting her needs. Right. Obtaining resources for her education, for her health care, for her dental care, for her hygiene and social needs. And that is really what drove my career choice.
• 1:49
  Speaker A: At around what age did that really start to impact you?
• 1:52
  Speaker B: Probably around like five or six, like school age, where, you know, I started to interact a little bit more meaningfully with my friends and their families. I started to recognize that I would go to play at my friends houses and they didn't have a sister with special needs or kind of parents that were as engaged with caretaking or. Caretaking, exactly. Caretaking from a. From a little bit of a different perspective as opposed to, you know, just being a parent. Parenting versus caretaking. I think that's an awesome designation of the difference. Yeah. And. And just having that sister again, the older I got as. As I'll call the oldest daughter without a neurodivergent diagnosis. I took on a lot of those caregiving responsibilities and support roles as a kid, and I loved it. But very early on, I was very integrally involved with my sister's care, and that's what drove me to ultimately become a dentist. Because dental care through both Lived experience as well as my own research is the number one unmet healthcare need for people with disabilities and special needs.
• 3:02
  Speaker A: The number one unmet healthcare need that hangs both heavy and honestly beautifully remind like a reminder to me and the community of my fellow autism parents because as we talked about before we press record, there are so many parts to the caregiving and caretaking and parent journey of a child with special needs that there's emotion attached to every one of those that those paths you take, whether it's, you know. And I, you know, dental health is physical health. So their physical health is one thing, but the attention to it and what it leads to in terms of a longevity standpoint, every practitioner has a. The best outcome, you know, for their child and what that input looks like from a parent can seem exhaustive. So you were saying before that unfortunately with even it being the number one health priority, it. It falls to the wayside because of the struggles.
• 3:57
  Speaker B: Well, and, and actually I want to clarify that a little bit because part of what makes it that not on the the most prominent unmet healthcare need is that it's often deemed to not be the top priority. And that's a little bit, you know, it's an interesting designation because I so love that you said, you know, dental health and oral health is physical health.
• 4:19
  Speaker A: It is, yeah.
• 4:20
  Speaker B: One of one of my biggest pet peeves is when people talk about the oral systemic connection because it's like it. There's no disconnect. Right. How can there integrally involved. There's, there's like. Your mouth is not over here.
• 4:34
  Speaker A: My mouth.
• 4:36
  Speaker B: Exactly.
• 4:38
  Speaker A: People really. Please tell me that people actually say that to you.
• 4:40
  Speaker B: Oh yeah. Oh my God. There's a huge, huge kind of conversation about the oral systemic connection and that derives from the fact that dentistry is kind of its own separate conversation carve out niche from medicine. So people think of them as being separate whereas as dentistry as maybe being.
• 4:58
  Speaker A: Conditioning of like dental health insurance versus medical. I mean so anyways that. But go back to what you were saying. So that's so the, the health care aspect of it and it not being.
• 5:10
  Speaker B: Yeah, so. So because of that and it's so interesting because it's so hard to kind of untether these concepts. But, but people often think that maybe oral health care or dental care is not as important as healthcare because it's not included in medical insurance. And honestly often isn't included as. Let me rephrase that it was deemed as a separate benefit or not necessarily always an included benefit even for things like Medicaid or check coverage. And so people think, oh, it doesn't really matter. I don't have to worry about my teeth because it's not part of medical care. That being said, there's this kind of then mental block that not only is it something that's not kind of societally deemed as important, but it's also very difficult. Your mouth is your primary means of breathing, eating, communicating. It is incredibly sensitive, and it is incredibly uncomfortable to have your mouth worked in for anybody. So then you add a disability, a diagnosis of autism or cerebral palsy or some sort of intellectual disability onto that, where people might not have the full capacity to understand or tolerate that sensory overload that comes from having work done in or around their mouth. And it becomes an even bigger challenge because not only are you then dealing with the general lack of understanding of why it's so important to keep your teeth clean, keep your mouth clean, keep your mouth healthy, but then you also have to grapple with the fact that it is uncomfortable, period, full stop, for anybody, but even more so for people with sensory intellectual challenges.
• 6:50
  Speaker A: All my heart keeps saying is right now is thank you, thank you, thank you, thank you, thank you for being you. Because I have a lot of experience in those first days of getting Millie and Mac to get their teeth cleaned, where I went to a pediatric dentist, right, Just a typical pediatric dentist. And the holistic approach and the lack of understanding of what those exact needs or sensory sensitivities to sensory input are warranted experiences for me, the caregiver and mother, as being like, straight jacket, holding my children down. And you want to talk about emotional experiences that form core memories of a parent, you know, I, I have probably what else are arguably going to be considered like, you know, ptsd. And in a parental standpoint, I'm sure children that have, you know, know, multiple surgeries done in their life, there's all. There's all sorts of emotional things that happen to a parent when their child has to go through something. I think that it's com. It's. It's not discussed about. What you just said is that the input, the sensitivity creates this litany of hurdles, even keep up a successful healthy mouth, teeth, gums, everything. And, and then you think about what those sensitivities mean for them in their daily life. So what they accept into their mouth, what. What they choose to put into their mouth. I think about going to my son and daughter's school yesterday, and a little girl who was so happily playing in the puddles after the rain had her chewy tube. Right. Her chewy tube in it. But I think talking with you, I'm like, how much chewy tube placement in the mouth would affect their bite and their teeth? Or that she fell over and she was literally chewing on rocks. Literally chewing on rocks. Now, I know everyone else is thinking, well, then don't ever put rocks in her mouth. She's seeking input. Right. This little girl is seeking input. And your practice is giving input, but it doesn't match up to what their needs are. But they do it for their health. And there's. It's so complex. It is so very complex.
• 8:40
  Speaker B: It is. And I think that it's so overwhelming, the complexity of it, that how I like to break it down, to make it accessible and approachable, is that every. And to use, Sarah, your kind of framework and phrasing, every inch stone is success. Right. We're not looking to successfully brush people's teeth with their mouth wide open for two minutes every morning and every night and deem that success or the only success.
• 9:08
  Speaker A: Right.
• 9:09
  Speaker B: Getting a toothbrush in somebody's mouth is success. Getting a toothbrush in somebody's mouth with toothpaste is success.
• 9:16
  Speaker A: That's right.
• 9:17
  Speaker B: Being able to have a child or a patient sit in a dental chair and do nothing else is a success.
• 9:26
  Speaker A: Yes.
• 9:26
  Speaker B: So the way I like to frame not only education, but my practice is there is nothing that is absolute. Our end goal is health and improved health and maintained health and acceptance of care. And that's going to be potentially different every day, certainly different for everybody. And it's a two steps forward, one step back. Dance oftentimes. But the big thing that kind of predicates the success and progression for patients and families and parents and caregivers is a kind of forming that foundational team, understanding what the end goals are, understanding why oral health is important, what derives, you know, from a pathologic standpoint from poor oral health and what the benefits are of good oral health, but also understanding where it's important to push and how to push, and where it's important to pull back and not seed a negative experience or. Or, you know, over sensitization or trauma. From a standpoint of trying to achieve.
• 10:38
  Speaker A: This progress, achieve the process, what would be one directive that you have directly to your staff? I know that, as I've experienced pediatric dental offices that do have an understanding of children with special needs and what you're discussing, that there's different levels of what the staff is aware of in terms of, you know, even just walking into the room with the patient and why the mother might be there, why the mother might have to hold an iPad above to get them to look or what. What would you think is the best directive as a parent to share with an office staff of their children coming in, aside from diagnoses?
• 11:13
  Speaker B: I think that's a very simple yet very loaded question. Right. And I think that. And again, you can speak probably more so as a parent, as a sister, my inclination is to say, this is my sister and these are all the things that she does. And this is. Right. So sometimes that's a little bit too much, I think, distilling it down to making sure that everything centers around the patient. Who is your child, who is my sister. Right. Making sure that the staff know they are the center of attention and to address them and their needs, as opposed to, as opposed to you as the parent. And the benefit that that does is it means that it helps the staff, it helps the provider build rapport with the patient, but also clues them in to observe the. The patient's responses to things. It gives the foundation of the. What's the word? Dignity and respect to the patient.
• 12:11
  Speaker A: To the patient, yes.
• 12:12
  Speaker B: As opposed to relying on you as the parent or caregiver to dictate what the dentist can or can't do or what you know, the patient, your child may or may not be able to tolerate. And I, I say this from a standpoint of it's challenging for parents, it's challenging for me as my sister's caregiver to not come in and say, she will accept this, she won't accept this, she can do this, she can't do that. But say this is my concern and this is what I want you to be able to address with her and then almost leaving it to the staff and provider to form that relationship with your children, the patient, such that giving the patient the opportunity to become accustomed to what has to be done from a dental perspective, but also form that relationship with the provider to make that progress.
• 13:05
  Speaker A: I have said now, and this is after years of different experiences, but saying I go in and say, historically we've had a tough time with X rays, let's try it today. And I think that keeping open to the possibility of those inch stones of growth does put that focus back on the patient even being my child, because it isn't about what I can tell you about Millie, it's Millie being Millie. And they, you know, every six months in for a cleaning, you are going to grow and change in six months. And so I think that's really good directive in saying it gives dignity to their experience. And, you know, all behavior is communication.
• 13:49
  Speaker B: Right.
• 13:50
  Speaker A: So, Mac, my son's inability to really lay back, like, lay flat back poses a big challenge, and it always has. So even the, even the, in the, of the chair going back, like you were saying, like, it takes a lot of twerk tweaking to that whole process, but allowing for it to evolve and make those small, you know, what, what, what are small but yet big strides. Because I never in a million years thought that Millie would be able to get X rays done. Like, never. I was like, good luck with that. And she uses your talker and she has a robust, you know, labeling ability now. And the second we go into the dentist office, Sydney, she said, angry, frustrated, angry, frustrated. And I said, yeah, me too, me too. I know. And I said, but we're going to try this again. We're going to try. And they have. And again, thank God for technology. And the wave in the, the, the, the new X ray machine just had her standing there and guess what sis can do? She can stand there. And it was one of those things where, like, it's all a part of this small growth that we lean into. And, you know, she was able to do it. Now, did we get every angle? Nope. We didn't have to use general anesthesia. And I thought, holy smokes, she's nine. But if we get that at nine, where we might be, we might be. She might have cleaner teeth than my typical tween in the next years. Yeah, falling out like crazy. So there's some of them from the first time.
• 15:15
  Speaker B: Yeah.
• 15:16
  Speaker A: So I, you know, I appreciate that point of view of giving the dignity back, even to children. I think we talk, I talk a lot about with parents that are older than me that have adult special needs children, and dignity is. That comes up a lot. I'm really glad that you mentioned it in a child too, because that forms a great, a way to form a great relationship.
• 15:36
  Speaker B: It also teaches the child that when they go into an appointment, there's, there's some element of choice.
• 15:44
  Speaker A: Right.
• 15:44
  Speaker B: And this is, this is a bit of a loaded topic as well. When I have patients come in to see me, and I do want to preface this, that my predominant area of focus is adults with disabilities.
• 15:56
  Speaker A: Great.
• 15:56
  Speaker B: Because adults get lost to follow up. Pediatric dentistry is very well covered. They're, you know, pediatric dentists are better trained in the management and care of patients with disabilities and special needs, and that falls off precipitously in adults. So I made the very conscious decision to not Become a pediatric dentist and be able to treat adults with disabilities a little bit more focally, like with a little bit of that focus. That being said, any patient needs to understand why they're at an appointment, what needs to get done at that appointment. From a standpoint of you're here, we don't want to waste your time, we don't want to make this a futile visit for you, but there's a choice. Nothing will be done to you without your understanding of what we're doing or why we're doing it. Sometimes I, you know, there's always like, you don't want to give people the option where they don't really have the option. So it's, do you want to sit in the dental chair or do you want to sit in this other rolly chair? But you have to sit in a chair and you want to open your mouth for 10 seconds or do you want to open your mouth for 20 seconds? Right, because I have to look at your teeth. That being said, you want to frame it as, we are going to do something for you today, and what we're going to do is going to depend on what you can tolerate, what is really manageable for you. But I always have the goal of getting something done. And getting something done could be as simple as having somebody sit in the dental chair and becoming familiar with it or having somebody get X rays. Right. There's, there's, and, and this is really where I love again, the it stones mentality. Having somebody sit in a dental chair who doesn't like sitting in a dental chair or has never sat in a dental chair is a, is a big win because it's again, introducing something that's part of the dental experience that is uncomfortable or can be a little bit overstimulating.
• 17:47
  Speaker A: Right.
• 17:48
  Speaker B: But the other point I need to.
• 17:50
  Speaker A: I need to press pause because something you said hits home. Even though you do practice with adults with special needs and disabilities, when you said, maybe we'll sit for 10 seconds or open your mouth for 10 seconds or 20 seconds. Both of my children are very receptive to counting in numbers for a process or for an act or for a demand put on them. And I believe a lot, specifically when the autistic pediatric dentistry world with children with autism, their receptive language is generally very high. So while the demand put on them, they're very demand avoidant that counting would be. I actually, for someone who is so aware of how counting can help in other ways, I had never thought about that when it came to opening your mouth. That Is huge. Thank you for that aha moment. Because I don't know if it'll be 10 seconds, but I can do five. You guys are quick, man. You guys get in there. Like, I'm always like, did you see something? How did you even see anything? But that's where I can give. Give such respect and honor to your practice and to your talent and to your profession. Whereas I can be and have ownership of knowing my child to help you do your job, which I. I mean, I. I'm always like, gosh, that. That angle of that tiny mirror was perfect. So that. Thank you for that reminder. Because the parents in my similar situations. That is an inch stone. Okay. This is what they could do. Almost like hold space for that there.
• 19:14
  Speaker B: That. The.
• 19:14
  Speaker A: That the practitioner is also very, very cued into how skillful they are to be able to do something in a short amount of time.
• 19:21
  Speaker B: Yep.
• 19:22
  Speaker A: And that in shown is there.
• 19:23
  Speaker B: And one other thing I do just like to point out about counting is very many patients that I know or work with, with autism are very receptive and very well versed in numbers and counting and kind of that more math decided brain element. But also counting gives you a finite state. Stop, right? Everybody wants to know, how long is this going to be? How long am I going to have to hold my mouth open? This is getting uncomfortable. This is getting tiring. When you say, we're going to count to 10 and then I'll give you a break, I find that acceptance of care and cooperation skyrockets because people know when you get to 10, I will get to close my mouth and I will have a break. Now, the key is honoring that, right? I teach my students all the time and I practice. If I go past 10 and I do not give you a break, that's it, we're done. I lose all trust. I lose all the confidence in the patient, and all that rapport and respect that I am trying to build with the patient goes out the window. And you can't. You're not. It's important to know and to really understand. You cannot fool people into doing something that they don't want to be done. Right. Autistic children are not. Not understanding or not intelligent and not smart. They're so like, there's so much intelligence. There is so much awareness. There's different.
• 20:46
  Speaker A: A lot of bodily. The bodily acceptance. They're like, oh, I know I don't have. I know that I can write down really like they lit. I mean, you can try the wedge or anything, like, but it's going to take a heck of a big vice to get this mouth open if they don't. So they do know their autonomy and their decision making.
• 21:04
  Speaker B: Absolutely. And it's so important. And this, this, you know, applies to any provider to help patients understand what is being done and why and not just trying to trick them into doing something you need them to do in order to get your exam completed or do your assessment. Yeah.
• 21:25
  Speaker A: Well, I can't thank you enough. I know this conversation is going to pull some nuggets of wisdom that for the community that I hope to serve and do serve, they are going to be able to bring this into their next appointment with their children with such a more sound clarity and understanding of what and why you do what you do, but also for what the road looks like down the road for kids like mine. The, you know, I will say the growth that is seen in those, those small little inch stones specifically in the dentist's office is something I even wish as a, you know, like diagnosed ADHD, neurodivergent 38 year old. I wish I had known as a child too. Sure. And I think that one of the, one of the biggest things that keeps me so excited is that I want, I want to divulge your age, Normine. But like as a geriatric millennial here, I really find that the younger generations of parents, like the new, the younger millennial generation, as well as those that are aunts and uncles or cousins, siblings to special needs children, are going to be entering a field and being more sensitive to all the things that you are teaching in your practice right now. So thank you for what you do.
• 22:30
  Speaker B: I hope so.
• 22:31
  Speaker A: You are.
• 22:32
  Speaker B: If I may offer one last job piece of advice, especially for parents or caregivers, one thing I do find is that when patients come in, and this is totally understandable from a standpoint of caring for your child or your person, but what I often find is patients, parents come in and say, you won't be able to do this. They'll need to be sedated. So to your point, you say, historically we haven't been able to get X rays. Let's try it. Do not plant the seed of what your child can't do, may not be able to do in a new experience. Number one, from a standpoint of just framing it positively and as an opportunity for growth and for inch stones. But also because once that seed is planted for a provider, they will not be nearly as willing or apt to then try. And for two reasons. Number one, because they don't want to put your child through a negative experience or risk hurting them or traumatizing them. But number two, because it takes a little bit of extra effort and time and understanding and confidence to really try to push a patient to do something that they've already had a mental block that they might not be able to do.
• 23:43
  Speaker A: That's right.
• 23:44
  Speaker B: So from a standpoint of doing our best to achieve that progress and make those inch stone, you know, incremental improvements, you always want to frame something positively. And I love that you said historically we haven't been able to get X rays. Let's try it today. It's helpful to have the context of what has worked and has not worked in the past. But, and I find oftentimes it sets the. It's a foundation. Because parents want their children to have general anesthesia or sedation because they anticipate it might be easier. There is a whole slew of complications and trauma and, and negative outcomes that come from that as well. So it's certainly there is a last resort. But, and, and I teach this again to my students, to my patients, to their caregivers. We always want to do everything we can to, to help a patient participate in their own care and tolerate in their own care, tolerate their own care without relying on chemical supports or sedation, et cetera.
• 24:42
  Speaker A: I love that. I love that. And I think when you get to the root of those trajectories of acceptance of the smaller wins and not setting up for what isn't going to happen, that also does. And it's making me take pause with myself of accepting the, that my child, while I'm in there, there are going to be typical children that are going to sit and bite down. And that all goes down to a lot of parents internal ability to reflect on what their, what their expectations are. And I think, you know, again, this adds to the complexity of it all. Is that as a parent, just, just remembering that the world's reaction to your child experiencing the world is none of your business. You're there to have your child experience and get health and get care. And, and however that looks and however that evolves, the fact that you keep showing up to do it means. Means everything. Right? And you keep doing it. Absolutely.
• 25:34
  Speaker B: Yeah.
• 25:35
  Speaker A: Dr. Sydney, thank you so much. You are going to be so helpful and I can't wait to put your information. I believe that you're down in D.C. area, Marilyn.
• 25:43
  Speaker B: I'm in Baltimore. Baltimore.
• 25:45
  Speaker A: I knew it.
• 25:45
  Speaker B: Yeah. Yeah.
• 25:46
  Speaker A: So listen, as special needs parents know, we are, we are not one to not travel for care. So if there if your practice is accepting new patients, if I have parents that listen, that have adult children with disabilities, I'll hopefully be able to put your information up there. Because anyone that comes into your practice is so lucky to have you as a practitioner.
• 26:08
  Speaker B: And even just from a standpoint of if there are questions I can answer, I mean, I love feeling like I have something to offer that's useful for people.
• 26:18
  Speaker A: Oh, my gosh.
• 26:20
  Speaker B: Anybody has questions for dental care, period, but particularly for dental care for people with disabilities, children, adults, whatever, I'm more than happy to have you share my information. I'd be so, so thrilled to, you know, be able to serve as a resource or a source of information for people. So please feel free to share.
• 26:39
  Speaker A: Wonderful. Thank you for being you and for what you do. And until next time, on the Inch Sense podcast.