Latest / Inchstones with Sarah | Autism Advocacy & Caregiver Stories / How to Support Children with Autism & Neurodiversity in Medical Settings: Insights from a Pediatric Anesthesiologist, Dr. Chelsea Willie

Transcript

How to Support Children with Autism & Neurodiversity in Medical Settings: Insights from a Pediatric Anesthesiologist, Dr. Chelsea Willie · Inchstones with Sarah | Autism Advocacy & Caregiver Stories

• 0:00
  Speaker A: Hi, everyone. Welcome to another episode of the Inch Zones podcast. Today I have Chelsea Willey, Dr. Chelsea Willey, here with me today. Chelsea and I had our lives converge at a conference for public speaking. And while our worlds are vastly different, in the communities that we serve, Chelsea and I connected because we really lean into our most authentic selves and helping the communities that we serve. Chelsea is specifically a pediatric anesthesiologist and channel. Chelsea, just thank you so much for being here today and for providing context because a lot of families like mine with neurodivergent children, we're in and out of doctor's offices all the time. Therapies, physicians, neurology appointments. You would probably be someone and have been someone in your exact field that has dealt with my children, whether it's general surgery for cavity fillings or for other operations. So what would be your directive and, and maybe pinpoint of like what you feel like is a great thing to talk with parents about?
• 1:05
  Speaker B: Yeah, I think so. I work in two environments. You know, I work both in the operating room and I'm also an intensivist. I work in the ICU when your child is also very sick. And I think in the OR setting we do a lot, like you said, a lot of basic things that you would not sedate children for. Normally, right. You wouldn't sedate children to do dental time. But I think the first thing I. What we've done where I work is we actually use child life a lot. And I think that it is great to already have talked to someone before you come in because you are changing their pattern for the day. And we as providers have to understand that too. This is not what Johnny thought he was getting up to do today. Johnny is used to getting up, getting breakfast, going to school, and especially a neurodivergent child, when you've changed their pattern, it's a different feel. And so, and I think that's the first thing we do that we already have. I can look up the night before. I have something in my chart that says this is what makes this particular child click. This is what that child doesn't like. So I think that wherever you may be, if there can be some kind of system or some way to get that across to the provider who you're going to meet, it just makes it easier, I know. To keep the lights off. I know what questions to ask. I know the stuffed animal already. Right. I don't have to figure all that out. And the 10 to 15 minutes that I have to do a pre op, um, and I think that that really helps. I know that person doesn't like to be touched in this way, you know, or I also know how they can communicate. Like I know they, that they are able to do A, B or C. I think it also helps me feel comfortable and helps you as a parent feel comfortable when that information has already been discussed and I already know it when I walk into a room because I'm a stranger. And I think that that's the piece of point.
• 2:48
  Speaker A: Right. So. So yeah, so you know, child life specialists aren't necessarily part of the process for other different medical, you know, things. Specifically my children who've done a few sedation dentistry procedures. It's so routine that like the whole process is pretty quick, but it's also so quick that it's like shocking that we can like get this done and be out and be and be there. Would you ever suggest that parents, you know, rehearse or practice kind of like those few things to tell in, you know, in that pre op situation of like hey, just a reminder. Cause if they don't get the whole chart, you know, on a child I always wonder what's overstepping my sharing and what's me just being a proactive parent because my children express differently. You know, they're both non verbal but I say, you know, historically XYZ has happened. This is what they like. Thank you for caring for them.
• 3:37
  Speaker B: Yeah, I think you make a good point. And I, as a provider, sometimes I'll just say what can make this day easier for you and then you can tell me that like that's a. And I, I don't think that's overstepping to say these are the top three things I don't need your whole 10 year history. I love to know like I will say when you came here before, were there any issues? I need to, I need to know that I think that's not overstepping and maybe today's a different day. It may go fine and I think that's okay. But I think it's totally fine to say this happened. This is what I did not like. This is what he or she did not like. And I think that that is not overstepping balance because you are the person that's an advocate and I think I don't care who, if a per. If a medical provider you're working with can't understand that they probably shouldn't be doing pediatrics. Right. The parent is an advocate. Is the parent difficult for us sometimes? Absolutely. But it's also has to be A mutual understanding that I'm here to take the best care of your child. I do. I don't think it's overstepping boundaries to say these are the things. But, but I think is a way to say it and say this may not be how this experience goes today, but in the past this is what has happened. And I think that that is helpful.
• 4:44
  Speaker A: Right. You know, that's, that's huge. Leaving room for the possibility that we might be smooth sailing today and it's, you know, completely fine. I'm sure, you know, that parents in my situation have had medical situations be like you said, sometimes it's smooth, sometimes it's a complete dumpster fire, for lack of a better term, of like physically restrain. Helping nurses physically restrain. And, and, and it's a bucket of mild trauma that we have to intake all the time. Right. And first of all, thank you for how you care for your patients and their families, because I just want to run and get every procedure done with you on my team for them right now. Like, I just go to Wisconsin. I go to Wisconsin. We get to Wisconsin.
• 5:29
  Speaker B: Yeah, exactly.
• 5:30
  Speaker A: But, you know, but I think, you know, it takes a lot of emotional intelligence from the parent to not feel like it's rigid. Right. And that there has to be a certain way of things that will take place in a medical situation. How do you feel that neurodiversity has been discussed more in your practice?
• 5:49
  Speaker B: Um, well, we have a whole program for it now. It's, it's actually the. It was first, it was a study to see whether it made a difference in some of the things that we did. And now it is a protocol like we. And it's a phone call that's made by our pre op team. And this is what we do. Right. And I think there's. There's actually a spot. I wish I could show it to you. A spot in my chart that gives me specific information. And you know, that is a neurodivergent child before you even like open the chart. So I think that piece is super helpful. And I think I know, like, even my child life specialist, there's certain people, they, they will have request certain of us. You know, I'm a pediatrician first. That's what I trained as. And I did not change the anesthesiologist. So my viewp is different and I've gone through different training. And so I'm probably going to push the limits a little bit. I don't typically bring parents back. I wouldn't. Oh, Sarah, you can come back but with a neurodivergent child, if it's going to help, I can do that. Like I can make that happen. I have put, when I was a fellow, I put a child to, to sleep with a dog. That is what that kid needed. They needed their guide dog. And we figured it out. Like you can, you can make those things happen. But I think it takes. My biggest thing though, it's so hard to do the day of if you walk in there and not prepared, it throws my whole day off and I don't have the time because it does take extra time. Which is why a lot of times a neurodivergent child, we try to put them first so that way we get them, we get them in, get them going and then they can come out and talk to you while the child is in the. Or you don't have to have the kickback where you're trying to focus on the child while you're trying to listen to post op plans or whatever the plan is for the day even so those, the kind of thing I think is super important. My biggest thing is preparation. I think if I don't know ahead of time, it just makes your day worse. It makes my day worse. It makes a child days worse. It's just because it takes time.
• 7:37
  Speaker A: Well, we almost have a marketing line there because my children crave preparation. Right. Like the day, you know, the day after Thanksgiving we're going to be in New York City and going to the Rockettes and we've been talking about that for weeks. You know, typical children like to know and prepare as well. But it's essential. So if you're preparing your child for it, prepare the team too and go that one little extra step in terms of making sure that the file is up to date with your child's needs once sensory specifics. Because you're right, we don't want to have to speak it into and shock a team in the moment. And I have to be honest, I've been guilty of that. Where in the dentistry area of X rays and things like that where. Whoa, whoa, whoa. We can't, we're not going to be able to handle that right now. And then it's attempted and this is not going to be a wonderful experience. But good luck. Please try. You know, is there a straight jacket around here? Because I'm going to have to help some help with the, with the, the arms and limbs flailing.
• 8:34
  Speaker B: I'll tell you something I learned from an attending when I was training that I have, I have actually told this Story a lot that we brought a child. It was actually a young adult, this person, because you know you're going to be responsible for your child for time into adulthood. So this particular patient was like, you know, 20, 21, something like that. And they had told this particular patient that he was coming for dentistry, going to the dentist. And that patient, I showed up pre op. That's not what the kid was there for. He was there for a surgery and couldn't under. And he couldn't understand why he had all of his clothes off in a gown to go to the dentist. And the point I learned from that attending that day, he's like, I'm going to have to cancel this case. I cannot. As a physician, you have not been truthful with this child. Young adult. And what a, what a, what a learning point for me. And then because I would. You don't like to cancel cases, but to say patient is not prepared and is not fair to him, despite what his mental capacity is like to, to force him to do something and then to lose that trust. I thought that was such a beautiful way to handle it. He's like, I just, we just can't do this today. And I thought it was such a great ripple effect.
• 9:40
  Speaker A: That's, that's, that's a wonderful example. And I think that gives a lot of parents beautiful hope in the, in the evolution of medicine and the inclusiveness of understanding neurodiverse children and individuals is that, yes, they, they, they need their bodies, their minds, their, their, their ability to respond and, and their dyspraxia, they're unable to control, you know, their limbs and such, all these inputs of a situation. And then you think going down the road, if, what if this procedure has to be done again.
• 10:09
  Speaker B: Correct.
• 10:09
  Speaker A: And so the standard that you're setting for what is expected these kids, you know, the, the ability they, they have to fit into a world not meant for their mind and bodies. Right? That's what's, that's what's forced upon them. And when they're seen as full humans, it's such a level of deep respect for that patient. You're giving such respect to the difference of that patient and how they, their lived experiences. Because I can, because their receptive language, I don't, I'm not sure if this patient spoke or not, but my children, their, their receptive language is 100%. They understand what's going on around them.
• 10:44
  Speaker B: And that's such a great. You're so right about that. And you would be a parent who would look at Me. And I think it's appropriate to say, talk to my child. Right. Like that, because that's important. Like, I. In general, when I walk into a room, I actually don't even look at you. I actually walk into a room and I look at whoever the patient is and I talk to them first. Like, the parent's not there because they're the ones. And I think the biggest thing that I. And even I do a lot of diversity work, too. What is that we all want in life? We want to be seen. That's it. It's simple, you know, And I think that's the piece that's so important, even for a neurodivergent child, who I know is not going to speak back to me and may cry, but I have focus on them. Or let me tell me about, you know, you have a teddy bear. How amazing.
• 11:29
  Speaker A: Yeah.
• 11:29
  Speaker B: And it's the same thing you do with any kid. Like. Like yesterday, this child wasn't even neurodivergent. But the child who's anxious takes a lot more time, but it's a lot more gaining that trust with that child to get them back.
• 11:41
  Speaker A: My daughter Millie is a little more advanced on her device than my son is. She uses a mini iPad as a talker, an AAC device. And we were at the dentist, and she brings it with her everywhere. She labels things, she talks. And when we went recently to doctor's office, you know, it was in a dentist chair. And she sat down and she went, scared, scared, scared. And even though she's been there over and over again, and I said, look up on the ceiling. And they had put her show, specific show. And then she was like, happy, scared, happy, scared, happy, scared. So it's this evolution, and it's like I'm able to see and understand. And then I do think that the practices and your practitioners, what you are able to get back from these children is even in their nonverbal or their very limited verbal communication is huge. And I hope that it gives you something back in return. I think it's really important.
• 12:33
  Speaker B: That's such a great piece. It's funny, I just was with a bunch of physicians on Friday and I said, they're like, gosh, I couldn't do pediatrics. I said, but the beauty of pediatrics is, look what a child can do. I go, adults, they'd be a whiny mess. I go, what these children can do. And the resilience. That's the piece that brings you back to work the next day, Right? You're doing it for you're doing it for that child. It's so funny. I had a same kid with the name yesterday and we said how Millie was a. And it was a God given name. Like it was, that was a name that it wasn't like short for anything. I was like oh my gosh. You know, but it's like funny you, it's a hard case but you're doing it for that kid because that kid is just. It's amazing to see what they look like on the other end. They're amazing.
• 13:13
  Speaker A: Yeah. Like way better than Gosh. I mean my younger two, specifically my Millie. Like gosh, my, my tween, my. I would hear about there, there would be weeks of complaining and frustration about like I can't believe you made me do blah blah. Meanwhile, Millie does something. She gets through it and gets home, hands you the remote control like put on my show so we can move on now.
• 13:30
  Speaker B: It's amazing.
• 13:31
  Speaker A: I always say it's the best way of living that like she just rolls with life and things beat off of her. Even though she might feel more intensely or more sensory explicit in the short term.
• 13:42
  Speaker B: Absolutely.
• 13:44
  Speaker A: Is there any other directive that you would like to share with parents, specifically ones with non speaking autistic children, about your profession and how to accept the beautiful gifts that you're providing to our children and to take that anxiety away?
• 13:58
  Speaker B: I think some, you know, sometimes the options we have is what we have. And I usually say I can either do this or I can do this because there's limitations and I think understanding that I'm not coming to work to make you have a crappy day. My big thing is safety first, safety for your child, safety for the healthcare team. Because as you mentioned, there's some children, there's different spectrums of what especially when kids get together different, you know, and I have to make sure that I'm safe and that I can, you know, I can't have a kid falling off a bed or whatever else is going on. So I think just being a little patient with. And we're all going to have different styles. I'm, I'm pretty straightforward. That's, that's who I am. I'm also, I will also tell you.
• 14:39
  Speaker A: Oh, but you're so warm.
• 14:41
  Speaker B: I'll figure out what works for you. I, I'll know which parent the joke works for and doesn't work for you. We, we're all a little bit different and know that I'm the different person that you maybe had the last time. So we all have a Different way of doing things. And it doesn't mean it's wrong. Right? It's different. And you still may have a similar result or it's not a great result. And now we know that doesn't work. Right? And we just, we make note of that and we say this was, this was, we, we've learned from it and we move on. But I think that that's the piece that is being patient, that I may do things differently, you know, or you're coming to a different institution where our way of doing things we pre med, whereas the other place did not. That's, that's a different feel. And you mentioned you don't have, not everyone has child life. Not everyone has music therapy, not everyone has therapy dogs. I have all that here at the hospital where I am. And I can, we can, we can work with that. But you don't always have those pieces. But I think I always go back to safety because that's really what matters. It may not mean I'm giving your child a great day, but I need to give your child a safe day to get through A, B or C, or if I'm in the icu, I have to keep them safe. I can't have them pulling tubes out or doing A, B or C to the best of my ability. Right. And I don't want to strap every child down if I don't have to. But we have how we work within the guidelines to, to keep your, your child safe, to get them through whatever it may be they need to get through. I, I think that's the part that I try to, no matter where I am, to come back to that piece. And I'm someone who doesn't have a child. And so they'll ask me, well, if it were your kid, well, if it were my kid, this is what I would do. Or this is, this would be the same way I would do A, B or C. But I, I, I still care about your kid. I look at every child. This is the last one thing I would say. I, I don't care who you are, what your kid has. I treat your child as if they're mine and I take the best care of them because you're giving me your precious peace. You don't know me. And that's what you're doing. That's your most like, like most valuable thing that you're giving me for that time. And I'm going to take your baby and you're going to cry, and that's okay. But I'm taking, I'm taking Johnny. We're going to go do this now. And that's what I do. It's not that I'm being mean, but we got. We got to get. We got to get everyone through this.
• 16:47
  Speaker A: I think that last portion that you just spoke to is something that parents that listen here could listen to before every doctor's office visit, every routine visit, because I know what I'm taking from. That is such a reminder of the space that I can hold for the practice of the medicine that's going to be provided for my child. Because there's always such heightened emotions around procedures, specifically with, you know, children on the spectrum and their reactions. And if we can just take a beat, right, Just hold space for the fact and remind ourselves that we're all in this for the safety and health of the child and give that benefit to the practitioner. Because I think as someone that's in and out of offices and therapy rooms and all this, literally every week, all week, sometimes we forget to give that space back to the practitioners, too.
• 17:41
  Speaker B: Right.
• 17:41
  Speaker A: Because so flooded with choices and navigating and this and that, like the. Of what's. What, the next thing is that we can forget to keep holding space for. What you're saying is you're doing the best thing for the safety and health of the child. I mean, we'd all be so lucky to have you as a. As a pediatrician. We'd all be so lucky.
• 18:00
  Speaker B: Thank you. I have a good time.
• 18:03
  Speaker A: You do? I said we're all. Listen, we're all. If the goal of a woman in life is to find her purpose and give back to the community, you have done it, and it is. So. Thank you so much for giving us time today. And I think that what you shared is going to resonate within so many parents of children with neurodiversity and approaching situations in the medical community. So thank you.
• 18:22
  Speaker B: Absolutely. Happy to help.
• 18:24
  Speaker A: All right, well, until next time on the inchtones podcast, thanks, Dr. Willey.
• 18:28
  Speaker B: You're welcome.