Boundless Abilities: Autism and More
Well-Being explores physical, mental, and emotional health, with a special focus on people with intellectual and developmental disabilities or behavioral health challenges such as autism. Each episode features a roundtable of clinicians, community members, educators, and other experts in the field discussing timely topics and sharing strategies to help cope with stress. At Boundless, our mission is to build a world that realizes the boundless potential of all people.
Boundless Abilities: Autism and More
Boundless Abilities Ep. 48: Boundless Dental Care That Truly Cares
Where can you find a dental clinic that understands the unique needs of an individual who has intellectual or developmental disabilities (I/DD) or behavior health challenges? The Boundless Health dental clinic is prepared to provide patients (and their families) with dental treatments tailored to them in a sensory-friendly environment where they will be given the time needed to feel comfortable. Listen as Shannon Whetsel-Horn shares how the amazing dental care her daughter has received has positively impacted their family. Dr. Ashiyan Rahman, dentist and dental director, and Dominique Horton, dental assistant, both share why they like working with Boundless patients. Boundless is accepting new dental patients so if you are looking for a dental home, please go to iamboundless.org to learn more.
Welcome everyone to Boundless Abilities: a podcast brought to you by Boundless. Boundless is a nonprofit that provides residential support, autism services, primary healthcare, day programs, counseling, and a whole lot more to children and adults. Our mission is to build a world that realizes the boundless potential of all people. I'm your host, Scott light. So October is National Dental Hygiene Month. It's very, very important to all of us, but the general public may not know that people with IDD and sensory issues going to quote a regular dentist, that can be a really tough experience. As hard as that office may try, their staff may not be trained to provide the type of experience that, for example, people with autism, may need. So we have three great guests to talk about how the Boundless Dental Program is different. Dr. Ashiyan Rahman is our dental director. Dominique Horton is a dental assistant, and Shannon Wetzel-Horn is a mom to Brooklyn Horn, and by the way, Brooklyn is here, but Mom's going to do most of the talking during our podcast recording today. But Brooklyn has received excellent dental care here at Boundless. Welcome everyone. It's good to have you here.
Shannon Wetzel-Horn:Thank you.
Dr. Ashiyan Rahman:Thank you.
Scott Light:So Shannon, would love to begin with you. Your daughter has been described so Brooklyn, that's you as the happiest person in the world, and you say she always has a perma grin on her face. That's appropriate, because, you know, we're talking about teeth today. Tell us about your daughter.
Shannon Wetzel-Horn:Well, Brooklyn is a 21 year old woman now. She loves Justin Bieber, Taylor Swift, and she loves Disney World. She loves to dress up in cocktail dresses, she loves to wear sweatshirts. She loves music. She enjoys every day. And from that, I'm able to learn from her to try to enjoy every day life is tough, but so she just, she takes, she takes life as it comes every day. And so she is now staying home with me. I am her caretaker. I'm able to do that. I've been a nurse for 20 years, but now I've transitioned into caring for her at home and advocating for her, whether that be taking her to dental appointments, whether that be, you know, to the doctor, going to the zoo. We have fun, but we get we take care of business too.
Scott Light:Let me follow up with you on on her care, because you said before that when you came to Boundless Dental, it was like a prayer was answered.
Shannon Wetzel-Horn:Yes.
Scott Light:Talk about that experience, her experience with dental care before, because before there was a lot of maybe some some frustration and some confusion. So give us kind of the before and the after when it comes to Boundless Dental.
Shannon Wetzel-Horn:Definitely. So starting out pediatric wise, it was pretty seamless, pretty easy. You know, she's diagnosed with cerebral palsy, obviously that never defines her, but it does come with its set of challenges. So we just do things a little differently, you know, we've done, you know, a little bit of the legwork we've, you know, gone every six months. We've been very blessed not to have some dental, major dental issues. So we've gone into the chair, we've done some visual exams. But from the beginning, it's been very, very difficult to ever get real x-rays. Because to get an x-ray, you've got to put a bite into the mouth, and before there was not those, those, what are they? Dr. Brahman the I'm losing.
Dr. Ashiyan Rahman:the X rays that go around that
Shannon Wetzel-Horn:Yes.
Dr. Ashiyan Rahman:the panorama.
Shannon Wetzel-Horn:Thank you. Yes, the panoramic X rays that they didn't have them. So I literally was living on the edge of wondering what's brewing in there? Something's brewing. So I just had to pray that nothing was like, gonna pop off to where I ended up in a situation, and this is when she's a kid, ended up in a situation where I'm stuck, like, what do I do? And so we're very blessed to then get to a point where, you know, they would go in and they would visually, we, you know, going every six months, finally got her to, you know, around later elementary to where she was used to someone going in and looking. And I think we've just been very, very lucky to come in contact with a lot of great providers that were able to do a lot of spot checking. And, you know, I've tried to do my part, so it's was okay. Now, doctors were saying, okay. Now listen, you. This has been going on for quite a while, and I was at the same place. We're on the same page at this point. This has been going to walk. This has been going on. We've got to get some x-rays. And I'm like, You're speaking my language. Sign, sign us up. What do we do? How do we do this? I I've done a little research, like, do we do sedation? Um, and of course, that was what was going to happen, because that cooperation piece just it wasn't there at that point. And now she's, you know, late middle school and high school. So at that point we had to, we had to do the sedation, because people had talked along the way about using a papoose. And Dr. Brahman, I'm sure, can explain, Dominique, explain what a papoose is. They had mentioned using one, but no one had ever done it. No one had ever suggested it, or, I'm sorry they suggested it, but no one had ever done it. No one had ever, you know, given me the education of what it really was. I'm aware of what a papoose is, because I'm a nurse, and I know that you use a lot in emergency care, but I had never been in this situation with dental care to understand that it is regularly used, because good oral care is just as important as physical care, and it is health care. And so I think that's lost on a lot of providers. From that point on, we hit as what people would call the service cliff.
Scott Light:Right.
Shannon Wetzel-Horn:And so I think a lot of people know what that is, but they don't have a definer to call it a service cliff. And a service cliff being you age out, age out of accessible care. In accessible care, meaning, you're a peds patientyou know, a minor, being able to see you know any pediatric doctor or non pediatric doctor, sometimes and all as well, you get the care you need, whether that be dental or physical. Unfortunately, the service cliff is a hard stop sometimes for people, depending on what challenges they have, physically, diagnosis wise. So that service Cliff can be, can look very differently to people. It can be something that people only, minorly can associate with, and then it can be it can wreak major havoc in people's lives, because that service cliff can cut you off from accessing, like, the type of medical care that your loved one or who you're giving care to, um that can cut them off from accessing the care they need, whether that be dental or that be, you know, physical.
Scott Light:Dr. Rahman and Dominique. Jump in here, because I'm sure you've heard plenty of of these very personal stories before, and I have to believe that when you when you hear a mom say this, this is why you got into this type of care.
Dr. Ashiyan Rahman:Definitely, I feel like the service cliff is very apparent, especially in our clinic. Whenever we do talk to patients and their and their families, like Shannon was mentioning before, there's lots of kind of resources for children, because they're able to be seen in a variety of places by variety of providers, and there's just more resources in general, so you know, or capabilities and sedation capabilities. But all of these children do end up growing up, and then they become adults, and then that's when we start seeing kind of that lack of care, lack of resources, lack of access to healthcare in general. And that's something that we even struggle with now within our clinic as well when we're trying to refer or just get patients the care that they need. So I think it's very clear that this is a major issue, and it's nice to have advocates like Shannon to kind of bring light to it. To highlight the need for these these services and, and I think that's what we're trying to do within our program as well. You know, even if we're not able to provide specific things, at least get in touch with certain resources that that we know of to get the care that patients need.
Dominique Horton:For me, it was kind of blinded. I didn't even know about this side of the world, to be honest. I mean, I literally just started working with this population in the beginning of January with this. I had a baby, and I was looking for, like, a part time job, and then I didn't even know that. Like, I mean, after going through the interview and everything like that, I knew, like they talked about, you know, this population, everything like that, but I just didn't know the depths of, like, what they went through, and, like the healthcare and everything like that. And as soon as I started working and everything like that, I was just all for it. But like, I was saying, or like what Shannon was saying, like, I mean, there's just so many like, roadblocks in terms of, like their care. And it's just like, it feels good that, like we even, you know, attempt, or, you know, we really try to do as much as we can each appointment, to even get them, like, some help, you know, and I mean, or trying to find them sedation, or, you know, it's just a really big roadblock right now for us, was the adult care.
Scott Light:Are you often the first person that patients and families see when they come in?
Dominique Horton:Yep, correct.
Scott Light:So you're trying to bring the heart rate down,
Dominique Horton:Yes.
Scott Light:From the beginning. How do you do that?
Dominique Horton:Correct. So I always go out there, usually more upbeat, depending on the patient. I kind of can, you know, read their vibes and kind of see what type of day they're having, because we know that's could either be good or bad. If it is, I just kind of go from there. So if they're willing to come back in the dental room, then all means will go back in there. Some of them don't want to sit in the chair, you know, and if some are, you know, certainly refusing to even go in the room, then I'll bring them in our sensory room. And if they don't want to go in there, I would just kind of follow them where they want to go. Sometimes.
Scott Light:You're like, dental assistant, sociologist, psychologist, you're like, you're really reading the room in real time.
Dominique Horton:Correct. Some of them want to walk the hallways. And all means, I will walk the hallways with them and try to, you know, just interact with them, you know. And I mean, just get to kind of know them and like what works for them, and things that they do like, things that they don't like.
Shannon Wetzel-Horn:This is a great example. Please tell him, this is a great example of what you face. What happened when I walked in? What was my demeanor? What was my adage? I was very I mean, I think I was very kind. I was very like desperate.
Dominique Horton:Yes.
Shannon Wetzel-Horn:But what, how did was my effect when I walked in?
Dominique Horton:So Shannon walked in. Brooklyn was very smiley, as usual. We brought her back. She was willing to get in the room, and she did sit in the chair. We did not bring up a papoose at that point, but Shannon's first reaction was like, good luck.
Shannon Wetzel-Horn:You know, when I remember I said, Yeah, this isn't gonna happen,
Dominique Horton:Correct.
Shannon Wetzel-Horn:And I just, I mean, I was laughing. I was like, good luck. This isn't gonna happen.
Dominique Horton:Correct.
Shannon Wetzel-Horn:Like, and I remember I specifically said, You're not gonna get very far, but that's okay. I know, I know. I know what we're walking into in because I didn't know her and I didn't know the clinic. You also have to be kind of on guard to protect, you know your loved one or who you're caring for. So, you know, I also have to protect, to make sure, like, she's not feeling any bad vibes either. And when I said that, it was like off the rip, she was so Dominique was so kind and so just warm and bold, that it was going to be okay and supportive and very calming, because on the inside I was raging, my emotions were raging, like I need this, but it's not gonna happen. And so I was convinced, because it that was the norm, and she would not take no for an answer. And I'm so happy that she didn't, because, you know, the next steps ended up being, you know, them, you know, using all everything they had in the toolbox to be able to get Brooklyn to open up, to cooperate, and they were so kind and so loving and so just, just the expertise was great. I mean, you can tell between someone that knows what they're doing and what they don't. We've been doing this long enough as caregivers. They were amazing. And I was like, Okay, I'm at the right place, but we're not going to get anywhere, right? So, and that's not what happened. That is not what happened, because Brooklyn could sense that authenticity in them, and she was cooperating, and cooperated a little bit more. But then again.
Dominique Horton:Yeah.
Shannon Wetzel-Horn:The hard stop. Like, okay, you saw my mouth, but you're not getting in it. And then that's when the papoose conversation came up, which I've had. It was very fleeting conversations in the past, like papoose, and then it's gone. They brought she brought up the papoose. And I was like, oh, yeah, okay, great at papoose, next. Are we done? Like, pretty much, you know, so, but that is not how it happened. They they took the next steps to, you know, have me sign the consent, and they explained to me what would happen. And they're very, very they educated me about it. What they would do, what Brooklyn's part would be, what my part would be, just kind of observing, if, if I needed to be a, you know, supportive to Brooklyn, I could do that. Obviously I would. And so it was amazing. And they got her in the papoose. She cooperated. This clinic was different. It was such an amazing experience. I felt it. Brooklyn felt it, and that's why she, she cooperated more than she ever has. I'll be honest with you, in any clinic.
Scott Light:Overall how is the Boundless clinic different from say, I don't want to say a regular clinic, but you know what I mean, a regular dental practice. How's it different here?
Dr. Ashiyan Rahman:I feel like one of the main goals with the dental clinic in particular is meeting individuals where they're at. So you'll you'll see especially a lot of our individuals have had a lot of past dental trauma and things like that, and they come in to an area that's very sensory heavy as well. So everyone comes in at different levels. So being able to recognize that and respect that is very important, and so once we do that, we're also able to kind of tap into other resources within Boundless as well. So like, for example, like behavioral health. So we have a behavior specialist on our team, Timothy Hafer, and he's able to kind of work with individuals on skill building so that individuals can kind of continue to come into that dental environment so it's not as scary when they do come in for their appointments, while also building on skills that that they need to develop in order to have a successful, successful appointment. And then, in addition to that, the clinical team also had a really great immersive training at NYU as well, and that was such an amazing experience for us. And I really feel that Dominique and our dental hygienist, Ebony Williams, they embraced everything that we learned there so beautifully. They truly are rock stars in not only making the patients feel comfortable, but also providing good quality care.
Scott Light:Did you have an experience, whether it was with family, friends, something early in life, or maybe when you started, whether it was dental school, or maybe a combination of both, where you thought, okay, this is where I want to put my career. This is where I want to put my personal passions, my professional passions, in this type of specialty, dental care, Dr. Rahman
Dr. Ashiyan Rahman:I do think about that. And I feel like, especially after being at Boundless I you know, when you kind of look back on your life and you're like.
Scott Light:Sure, sure.
Dr. Ashiyan Rahman:Oh, I feel like maybe this was just a combination of everything that's kind of happened in the past. I come from a pretty humble background, and I saw how difficult it was to find the the right resources or the right practices or right programs to to get basic healthcare. So I saw how high need individuals are often underserved due to the lack of access to healthcare, and how easy it is for that cycle to just continue. So when I when I became a dentist, I saw that in in dental school as well, and so I kind of wanted to contribute in whatever way I could to at least disrupt that cycle a little bit. And then, in addition to that, later on in life, my brother-in-law, he's autistic, and he was kind of my introduction into that world, kind of more on a personal level, and I saw how difficult it was for family to find dental care specifically. So that's why I'm so passionate about the dental program in Boundless in general, because I feel like the organization as a whole genuinely cares and works really hard about in order to kind of provide, you know, quality and dignified care to individuals who are often overlooked or just don't have the access to care that you know some of us might just kind of take for granted.
Scott Light:Dominique, you told us similarly, you told us a little bit about your backstory and how you came to Boundless. You could go anywhere as a dental assistant, that is a job that is very much in demand. What keeps you here?
Dominique Horton:So again, like I said, I just kind of like stumbled upon it. Again, I never had a clue about this side of you know, like the population and everything like that. And yes, dental assistants are in very much a need. But I'll say, like your regular dental office, it's like, like, since working at Boundless like, I'll never go back like, in terms of like your regular
Scott Light:Really?
Dominique Horton:Yes, I'll be completely honest. I've only been a dental assistant for about three years now, not too long. It doesn't seem like, but like it's so different from your regular dentist's office. Your regular dentist office is so fast paced, you're very tired, and there's just such a, it's just such a change in terms of, like, you know, the people you know, the environment and working at Boundless has been again, just like I'll never go back to your regular dentist office. I just, it's just, it really is night and day, you know. And I still, like, in the beginning, because, like, we were part time, like, you can go and work, like a temp job or anything, and when I go there, and then when I come at Boundless, I'm just, like, Boundless is like a fresh breath of air and then, like, at another office, you know, you're just so, like, it's just so, like, fast paced, and I just, it's just a different environment, you know? And I mean, like the people that are around and the patients too. It's very, I don't know the exact word to describe it, but it's, it's very, night and day.
Scott Light:I get the sense that you're really appreciated here.
Dominique Horton:Yeah.
Scott Light:On all sides.
Dominique Horton:Yes. Correct the patients, my coworkers, and just in general, and like, I've never gotten like opportunities that, like I have here, like anywhere.
Scott Light:As I look around our studio here, and I think about we're in season four of the podcast, and we've had a lot of parents come through our studio over the years to talk about that services cliff, because it is real, especially in our mainstream healthcare system. And we're certainly going to keep talking about it. We've got to, got to take a megaphone to to those issues. But as I look around the table at all three of you, we have three medical professionals here, because we have have a 20 year nurse here as well. How do we to all three of you, how do we keep making our voices louder about those specialized services that are needed out there? Obviously, we're talking dental, but again, it's, it's broader in the in the broader healthcare system for people with IDD. Mom, Shannon, how do we how do we make our voices louder?
Shannon Wetzel-Horn:I'm going to take this somewhere serious. We need legislation. I mean, we need to talk to lawmakers, because there is a major gap. There's a large, very large community of people that are not being addressed when it comes to oral care, but also physical care in some aspects too. But the oral care piece, the dental piece, is really significant. It's really significant. I mean, they're not to get into it, but, you know, people an oral infection, it can be very life threatening. And so that is something that can come about if you've got a loved one that can't tell you they're in pain, or that can come about if you've got a loved one that is sitting waiting to, you know, see a doctor or to be able to get into that operating room to have that addressed. There's people that, you know, they have to give antibiotics before they go into addressed infection, you know, and had things happen in the meantime, because it's out of control. Bad things can happen from dental care. I mean, it's serious, and people know that, and, and that's the elephant in the room that people don't want to talk about, because it's scary. It's serious and there's life threatening consequences, and so that's that piece in the back of our mind as caregivers like this has real consequences. This isn't just, you know, I am going to show up or my loved ones going to show up to their day program, or to, you know, the zoo, or to wherever, and their teeth may look dingy because they weren't polished, or they haven't been to the dentist in a while. It's, it's a, it's a major health fear, concern, and it needs to be addressed like yesterday. So I feel, you know, I feel that needs, somebody needs to pick that up and carry that to that issue, to people that can do something about it. Maybe that's me. I don't know. I've done a lot of thinking about this. This is, this is serious, and whether anybody would do anything about it, I don't know, but somebody's got to try.
Dr. Ashiyan Rahman:I feel like continuing to do what we're doing right now, having these conversations frequently, and I completely agree with Shannon in terms of kind of, like the legislation aspect as well, kind of sharing these experiences and what we see, whether it be from a healthcare perspective, or from a loved one's perspective, or even from a individual's perspective, is really important, because what we learned is that a lot of people, unless they're personally impacted by it, don't really know that this is a need, or there is a need for certain services, or there's a lack anywhere in this in general. So kind of highlighting that and spotlighting that is really important. And kind of having that data to back it up is also important as well, so that we can kind of quantify, like, hey, these are the reasons why, and this is what we've seen in practice. So kind of having those conversations, gathering those stories and that data to be able to back up what we're saying in order to make change within you know, hopefully legislation so that it is something that is recognized, you know, and and fought for and advocated for in an appropriate manner.
Scott Light:Well, and to Shannon's point, you know, when people go in for their six month checkup, whether it's you know, to for teeth cleaning, polishing, but you're also checking for oral cancer while those patients are in there.
Dr. Ashiyan Rahman:Exactly. Yeah, and I feel like a lot of times people don't realize that either, because, you know, when you go to the dentist, you already have one foot out the door. Nobody wants to be there. So there are a lot of other things that we're doing while we're, you know, kind of checking out the teeth. So it's not only the teeth. So we're looking for for oral cancer, and especially in our patient population as well, because individuals are generally medically complex. You know, there's lots of medications and things that they take and that can impact your oral health as well. And your oral health is kind of the gateway to the rest of your body, so that really it all connects and it makes a difference. It's important to not separate it as much, and kind of work together and kind of move that forward.
Scott Light:And for anyone listening who may need these specialized services that we're talking about of Boundless Dental, Dr. Rahman, where can people find out more?
Dr. Ashiyan Rahman:So you can find out more at iamboundless.org. You can also feel free to call in to Boundless, and they'll get you routed to the dental department. And we're super excited because we're going to be opening our clinic up five days a week soon, so we're accepting all new patients. And are just super excited to kind of be expanding the program in general.
Scott Light:And Shannon, as we start to wrap it up here, what is your message to others out there who need these services, other parents or anyone listening, who may think, you know what, I need a place to go. Well, they have it here at Boundless.
Shannon Wetzel-Horn:They do. And everybody needs a place to go. Because, like Dr. Rahman said, oral care is wonderful care and holistic care. It addresses you from head to toe, inside to out. So I implore anyone listening, if you have a loved one that you cannot find oral care for you feel that you're not going to get anywhere as I felt, which I was proven very wrong. My daughter was able to her needs were addressed beautifully. Or if you like, I said, if you can't get in, or you don't even know where to start, if you are just now picking up, you know, the responsibility of caring for someone that you've never cared for. If you're a service provider in you need a resource to tell you know your your your clients, where they can turn to I confidently can can say this is the office where you should at least start. And then if there's additional needs, you know that they need to refer out for additional, more invasive care, then they'll do that. But start here. Start here for that cleaning. Start here for that just check up, even if it's a visual, just start here. This. It was such an amazing experience for me, but for Brooklyn, it was, that's what, that's what was important, right? It was an amazing experience for her. She is healthy. Dr Rahman didn't see anything crazy, and that's why I'm saying, like, start here, start here, and then if addition is needed, additional care is needed, outside of the office, they set us up. They set us up. We're on our way. Like it was seamless. That's why I feel comfortable telling people, start here,
Scott Light:100% start here, and Brooklyn smiling this morning, which is great, yep.
Dominique Horton:Showing off her pearly whites.
Scott Light:Yep that's right. Thank you all for being here.
Dr. Ashiyan Rahman:Thank you so much.
Scott Light:Great conversation to our listeners. Thank you as well. Don't forget you can be part of episodes to come, you can always email us your questions or comments at podcast@iamboundless.org. This is Boundless Abilities brought to you by Boundless.