Supporting Autistic Children with Complex Medical Needs, Part 2

What happens when autism support must also account for feeding tubes, seizures, mobility needs, hospital visits, communication limitations, and other significant medical concerns?

In Part 2 of this conversation, Sarah and Kristine explore how families and providers can support medically complex autistic children without losing sight of autonomy, comfort, communication, and quality of life.

They discuss gradual food expansion, the limits of behavioral intervention, the effect of poor sleep on learning, visual preparation for medical care, adaptive communication, insurance barriers, emergency planning, and the role schools can play in creating meaningful access.

The conversation also asks an important question for clinicians: Is a goal worth pursuing simply because it can be measured, or should every goal produce a meaningful improvement in the child’s life?

This episode is intended for parents, caregivers, ABA professionals, nurses, educators, therapists, and referral partners. Medical decisions should always be made with the child’s qualified healthcare team.

Acorns to Oaks is presented by Nurture & Nature ABA, providing compassionate ABA therapy and parent support in Valley Village and the San Fernando Valley.

Learn more or schedule a consultation: nurtureandnatureaba.com

Follow Nurture & Nature on Instagram, YouTube, Facebook, and LinkedIn.

This podcast is for educational purposes only and is not a substitute for individualized clinical care.

Transcript

SPEAKER_04 0:07

All right, welcome back to part two discussion about medically complex children on the autism spectrum. I'm Sarah. I'm Christine. And you're watching Acorn Stores. You know, um, when we approach feeding and diet expansion, it's something we do slowly and we we don't force anything. So the child is is really the one that is experiencing up to where they're comfortable. Uh, and and it's a slow-moving process. The feeding tube allows for that to happen because they are getting what they need to be healthy and alive and grow. Um, and at the same time, it makes the opportunity for it to be um a diet expansion or feeding program that is at their own pace.

SPEAKER_03 0:51

Absolutely. And we've seen parents consider uh going onto the feeding tube and saying yes or no. And then we've experienced the transition of patients coming off of the feeding tube, going to um soft foods and liquids. Uh yeah.

SPEAKER_04 1:07

Yeah, and every child is different, and you'll have uh kids that progress pretty quickly on and off. You'll have some that it takes a really long time, you have some that might not come off of the tube. And I know it's a really hard decision for parents. I think that it's it's pretty devastating to be told, well, they need to have this feeding tube placed. Um, however, it really does then open up a world uh for exploration for that child in terms of eating and food and what they're comfortable with, while also maintaining bodily autonomy, you know, so we're not forcing anything in anyone's mouth, right? But they are still being provided with the nutrients they need to grow.

SPEAKER_03 1:44

Yeah. But the tube feeding can be aversive to the individual.

SPEAKER_04 1:48

It can. It can. And certainly at the beginning, I think like any uh large medical change, um, there there is um a change in how you can move. There's a change in maybe what clothes you can wear. Um, you have to now maintain it, right? So there's uh daily routines that change, and so that can be aversive, yeah. Um I think again, we can help with that in terms of the way that we present it so that they're prepared for what that might look like as much as possible. And um also allowing them to have some control. Maybe they assist with, you know, opening the tube and as the nurse um at connects it, for example. Um I like that. It's very empowering.

SPEAKER_03 2:34

Yeah. Kids like power. You know, power is not just for adults, kids like power, they like to be in control. Yeah. And they'll they'll always tell you, they'll be like, okay, I'll be the teacher and you be the student. And like, you know, they love that sort of control. So having them help the nurse, um having them be involved, I think, because it's also their body, right?

SPEAKER_04 2:58

And we want to teach them that, you know, this is this is your body and you're making these choices um to participate. Um giving them that opportunity, I think you're right, is really empowering.

SPEAKER_03 3:10

Yeah, absolutely. And I think one of the hardest challenges is that with the G tube after they're fed, then usually comes um, and this is just in my limited experience, a water flush where the child has to sit for close to an hour. And that can be really challenging for little ones who yes don't want to sit.

SPEAKER_04 3:30

Yeah. So that, yeah, absolutely. Depending on the speed of the feed, um, and then the water afterward, you know, it can be um pretty long. Yeah. So having um some activities that are only for when we're sitting, um, I think can be really helpful. Um, doing some pretend play, doing things that are really fun and reinforcing for that child during that time can be very helpful with those behaviors when they want to get up and they want to run around, right? So um we we can assist with that. And I think that we do a pretty good job in terms of coming up with creative ideas for well, what can we do in this situation that will make this better for this child?

SPEAKER_03 4:11

Yeah. And it's it's it comes down to pairing, you know, if you have a if you have a neutral experience um and you're pairing it with something highly reinforcing, then the likelihood is that it's going to be reinforcing, that the reinforcing properties will override the neutral experience.

SPEAKER_05 4:32

Yeah.

SPEAKER_03 4:32

If something's aversive, you have to have something highly, highly, highly reinforcing. And even then, it might not always override the aversiveness of the experience. So, for example, uh, you know, having your child's favorite show um on television is one of the ways we get one of our medically fragile individuals to uh sit in the chair for the flush. Yes. Yeah. And it's like you get to watch Teen Titan for an hour. And like that's part of their daily routine. And the more you do things in a routine and allow them to be involved in it, I love that. It seems like it would go better. Um I asked this question at the meeting at our um leadership meeting on Friday. And I I always still like to quiz the team. And I was like, what did the empirical-based interventions for feeding go? And they were just like, Did you see that?

SPEAKER_00 5:35

Yeah.

SPEAKER_03 5:36

They're like, what? Like, yeah, let's name them out. Who's got one? Come on, people, who's got one? And so um, we we know that ABA does have some effective strategies and empirical-based interventions for food expansion and food feeding, but then it comes right up against the line of medical, and you have to know where that line is to see medical attention.

SPEAKER_04 6:00

Yeah. And it kind of goes back to what we were discussing earlier about is this behavior or is this um pain or is this something physical? Is this something different? Right. So um I think the best approach to feeding really is a multidisciplinary approach. Um, behavior is certainly one of those components. Um, and we do have some really good interventions that do work. Um, but we're not going to solve a problem with swallowing. We're not going to solve a problem with absorption of nutrients, right? So that's where we really need these partners and other fields to really usher that child to the most healthy outcome possible.

SPEAKER_03 6:41

Yeah. And it's not always through um behavioral interventions. Yeah. But let's name the behavioral intervention. Yeah, since we're here.

SPEAKER_04 6:49

So the ones, and I'm I'm sure there are more, actually. Yeah. Uh, but the ones that we are very familiar with, first of all, escape extinction, which we do not do.

SPEAKER_03 6:58

Yeah, that that that is um, I've seen escape extinction done. That is so aversive to anyone shabbing something in someone's mouth. And I think the board really took a lot of great feedback and made changes for a scent-based care. So escape extinction with food expansion should probably never be done.

SPEAKER_04 7:21

And and just a quick reminder for those of us who haven't heard us talk about this before uh escape extinction is where essentially the child is put into a position where they are not able to leave and food is pushed into their mouth until they eat it. Um, as you can imagine, this can be pretty traumatic and can lead to some further problems down the line because if we are inflicting trauma, um, we're likely to cause further problems.

SPEAKER_03 7:44

Yeah.

SPEAKER_04 7:44

Um I never did that. We don't do that. Yeah. We don't do that.

SPEAKER_03 7:48

Now that you know if you if you have good sense and discernment, you could look at that intervention and be like, yeah, I'm not doing that. Other, I always tell all the clinicians and the trainees, like, put yourself in their shoes. Would you like someone doing that to you? Right. If the answer is no, don't do it. That's probably not the right choice.

SPEAKER_04 8:12

Yeah. Now there are programs that are inpatient that do use escape extinction in. And I'm not here to judge anyone for what they're doing. I think that for the most part, people are trying to do the best they can to help their patients. Um, I just know that at Nurturing Nature, we don't do that within a home setting. And I I think it's pretty dangerous actually to do within a home setting. Yeah, I've never done it. Yeah, I haven't either. I don't think I ever went like. Yeah. But it is an empirically based method. So there we've discussed this.

SPEAKER_03 8:40

It is empirically based. Yeah, yeah. Some research behind it. It does work, right? Yes. And it basically looks like spoon to lip until you open your mouth and eat it, right? Yeah.

SPEAKER_04 8:48

And then there's also uh a method where they insert a brush into the mouth and open the jaw to put the food inside too. So they're there, it's pretty intrusive.

SPEAKER_03 8:56

Yeah.

SPEAKER_04 8:56

Yeah. It sounds pretty awful.

SPEAKER_03 8:59

Yeah. I think the feedback from the community on that intervention is probably pretty valid. Yeah. Because that reminds me of the book 1984. It's Orwellian. Yeah. I would not like that.

SPEAKER_04 9:16

Well, I think the feedback's valid. Yeah. It is valid. And I think that as a company, we have decided it is not right for us and it is not something that we would do, but things that we do use for diet expansion. Yeah. Um, so the PRT method is a favorite of ours, yeah. Um where we we are uh using a hierarchy to present the food again and again. Uh sort of a slow desensitization method with a strong reinforcer to move us forward. So maybe all the senses too. Exactly. The first is just looking at it. Look at it. Is it on the plate and are we okay with it being there? Right. Yeah. That's step one. And if you really think about the things that you find most disgusting, which I think is really important for anyone doing feeding, we really have to consider what would I do if they presented me with the most disgusting thing I can think of. Um, and is it uh realistic for me to expect someone else to respond differently? If they do truly feel disgusted by something, by a color, a smell. Oh, yeah. You know, um so uh certainly when our children struggle with sensory input to begin with, it doesn't surprise me that there are things that would be icky.

SPEAKER_02 10:22

Yeah.

SPEAKER_03 10:22

Yeah. Well, I told you about my big problem, how I drove my parents crazy when I was little. She was a very strong-willed child. It was like, if the food touches, I won't eat any of it. We can't touch, we can't mix textures.

SPEAKER_04 10:36

Yeah, yeah. Yeah, you can't leave the table until you eat that carrot. Yeah, and then at midnight, okay, go to bed.

SPEAKER_02 10:41

Yeah, go to bed. That was liver. It's like you're gonna sit here until you eat this liver. I was like, Yeah, I'll just sit here when I'm my dad.

SPEAKER_03 10:51

It's time to get up and go to bed. I did not eat that liver. Yes, yeah, and kids will do that. They will, if you give contingencies and you create power struggles, you're gonna you're gonna get one and you might lose. Yeah. Because kids will do things like planned ignoring. Planned ignoring can go off the rails because if the little child picks up an object and puts it to their eye and they're like, it's like you can't ignore that. And the child will know. So be careful of the contingencies you set. That's for sure. But back to food expansion. Yes. So PRT, we look at it, we touch it, we smell it, you know, and very slowly. Very slowly.

SPEAKER_04 11:34

Yeah. And the idea is that eventually you'll be able to take a bite and eat it without showing a sign of displeasure. So that is a sign that, hey, we are no longer very sensitive or very uh grossed out by this food, and we can move it into their regular diet. Um, but it does move very slowly. Yeah. Um, a similar method um of a sequential presentation is done in speech and OT, but that is done typically without a reinforcer. So similar idea. And that's called SOS, right? Yes, that's right.

SPEAKER_03 12:04

Yeah. Very similar.

SPEAKER_04 12:06

Very similar.

SPEAKER_03 12:07

But I think the PRT methodology is slower and more systematic.

SPEAKER_04 12:11

And and it has that that component of reinforcement.

SPEAKER_02 12:14

Yes.

SPEAKER_04 12:15

Which leads me to another um approach, which is our pre-mac principle.

SPEAKER_02 12:19

Oh, yeah.

SPEAKER_03 12:19

Eat what's on your plate and then you get dessert. Yes. That's the idea. Um take a bite of chicken, then you can have your chips. Yes. Exactly. And parents use that all the time. All the time. And like you need to take five more bites.

SPEAKER_02 12:32

Right. Yeah.

SPEAKER_04 12:34

Yeah. So also fairly similar. It just doesn't have that structured approach of, well, today we're just gonna smell or we're gonna look or we're gonna touch. Um, it's it's you know, you eat it and then you get this other thing that you like.

SPEAKER_03 12:46

Yeah, yeah, absolutely. Um, and then mixing simultaneously pairing, right?

SPEAKER_04 12:53

Yes. So we take something that we know we like and a very small amount of something new and we pair them together and then slowly expand on the size of the new item um blended within this experience to pair something new with something that we already like.

SPEAKER_03 13:10

Yeah. Yeah. Like quesadillas, right? So if we want our child to eat broccoli, we start slowly putting broccoli in the quesadilla. We slowly start putting onions in the quesadilla.

SPEAKER_05 13:21

Yeah.

SPEAKER_03 13:22

Yeah. Little by little.

SPEAKER_04 13:23

And um that also works with some families. Now, none of these approaches I think are right for everyone.

SPEAKER_03 13:30

Yeah.

SPEAKER_04 13:30

Um, and they take time. They take time. And don't push. Exactly. If you push too hard, you get a power struggle. Yeah, yeah, yeah, yeah. So uh another program that I really like, which is done preclinically um developed by Yev Verka up in Washington. Shout out to Yev, B C B A. Uh, she works on um meaningful meal times. So it's essentially looking at not only consumption of foods, which a lot of us are focused on, but also what is the experience at the table? Are we connecting with one another? And sometimes just modeling of eating foods and just saying, oh, I like that is enough. Um, if you can reduce the pressure on the child and it will also reduce the pressure on the parent. And then over time, eating is less of an aversive experience for everyone.

SPEAKER_03 14:17

Yeah. And so to that, to try to make mealtime better and more reinforcing, uh, bringing in crayons. Yeah. You know, bringing in small little toys for them to play with throughout. Um, let's face it, a six-year-old doesn't have the conversational skills to hold attention for an hour during mealtime.

SPEAKER_04 14:39

And that's an excellent point because a lot of our kids on the spectrum struggle with social interaction and find it actually really taxing. And to come to a table, have to try new foods, and then also be expected to engage in this skill that's really difficult of socializing and having conversation can be really overwhelming.

SPEAKER_03 14:59

It can be overwhelming for everyone. Right. If you're at a table. She's like, I'll tell you a riddle and you guessed my name. I was like, uh, Kevin, um, can we sp we need to switch spots? That means a lot of work.

SPEAKER_00 15:38

It's like, why? It's like, I don't know. Isn't that Rupple still skin? Yeah, still skin do that. I was like, what is going on? I don't think I can sit here all night for a six-course meal.

SPEAKER_01 15:52

Yeah, so it can be overwhelming for everyone. It can be. It can be. Yeah. Especially when you're sitting next to a stranger. Yeah. Yeah. You know, it's like, oh, that could be a lot of work. Yeah.

SPEAKER_03 16:03

It's like there's always that moment when you're when you're going to a wedding and it's like, what table am I at? And it's like there there is a little pause of anxiety because I think people are like, who am I sitting next to? Yeah. And what is I like is the conversation gonna have to be.

SPEAKER_04 16:20

Yeah, I went to a birthday party last night um for someone who was really important to my husband who I hadn't met before. Uh five tables, no place cards. You just had to sort of sit down and get to know people. And and I was great. Um, but there's certainly an anxiety. And if there's an anxiety for us, there's definitely an anxiety for a lot of our cli or kids that we work with, you know, in that social environment. But ideally, you know, we should all come to a table, especially in our own home. We should feel safe. We should feel that there's a space for us and that we are accepted. Um, and then also that we can nourish not only our relationships, but our bodies as well at the table. That's our hope.

unknown 17:02

Yeah.

SPEAKER_03 17:02

But psychological safety and comfortability goes a long way in the world. It really does with feeding and and meal time in general. Um the simultaneous peering can be such a great method. I think uh Shalina Brennan of our executive clinical director, uh, her son was like, Mama, why is the quesigia green? She was like, Oh, it's just new cheese. Just new cheese. You know. Um, but that's simultaneously pairing. Other things would be like sprinkles, right? Sprinkles on yogurt or sprinkles on oatmeal. Um, sprinkles can go a long way, bringing the fun factor to the table. Um, also, research has kind of uh alluded to cutting fruit snip into fun shapes and having like the Fourth of July sparkler wands of watermelon. Yeah. And kids do like fun shapes in their food. Yeah.

SPEAKER_04 18:01

Um and including them in the meal making process as well. It gives them an opportunity again to uh be exposed to the foods, but to hopefully pair it with a fun activity so that it becomes a less aversive, less scary experience.

SPEAKER_03 18:15

Yeah, because sometimes things in bowls that you don't recognize are like, oh, I don't I don't know if I want that. So identifying the food and letting them see how it's made goes a long way to unlocking that mystery for them. Yeah. Where there may be just aversively like it's annoying. Yeah, oh wait, I saw it. It had whipped cream and peanut butter or something, you know. Yeah. Things I like. There was some things that I liked in that. Uh so identifying the foods and showing them how it's made goes a long way.

SPEAKER_05 18:45

Yeah.

SPEAKER_03 18:46

Um, how does sleep affect health and behavior in medically fragile, autoistic children and individuals? So sleep is a big deal. Yeah, it really is.

SPEAKER_04 18:56

So um if if you have a child who there's a um suspicion that they may experience seizures, one of the ways that we try to um provoke a seizure under the circumstances in which it can be observed is a lack of sleep. So um if we're not resting, you're talking from a medical mind. Like in a hospital. In a hospital, we're trying to figure out if if you're having a seizure or not, and they get all of the equipment involved, uh, but we need to provoke it to see if it's actually happening. Uh staying awake is one of the ways that that is done. So that it can be determined that yes, they do have a seizure disorder, and yes, here's where it is, and what we need to do to move forward safely. Um, we don't do that at home for fun. No. No, never. But it does show you the power of sleep and what that can do. If you do have a seizure disorder, you're likely to provoke this experience, which in ordinary circumstances we really don't want to happen. Um, further, uh if you are short on sleep, um, your immune system is less functional, um, more likely to get sick. Um, also, our preferences for junk foods increase.

SPEAKER_03 20:11

I heard that. When you are sleep deprived, you're more likely to go towards fatty, salty, sweet foods. Right. Yeah.

SPEAKER_02 20:19

Yeah. I do. Yeah.

SPEAKER_04 20:20

Um it's uh, I guess essentially a stress-coping mechanism for some of us. Um, but yes, sleep is so foundational to every part of our health system in our bodies. And also um our our kids often struggle with sleep. And so we do see behavior changes that we can associate with. Hey, they didn't sleep last night and they are in no mood for any of this today. Right. So, again, that's why we need to be so flexible with what we're doing.

SPEAKER_03 20:52

Absolutely. Yeah. Flexibility is key. When to push in, when to pull out, when it's not a good time to even approach. That's the discernment that phenomenal clinicians uh learn over time is like the discernment of gauging where we are in space and time. Where is this patient at in terms of sleep deprivation?

SPEAKER_04 21:16

Absolutely. And and what is the cost benefit of what I'm doing right now? Is this going to be a positive outcome? Are we going to learn today? Can we learn today? Or should we maybe back off a little bit today? Um, because if I try to force through something that's really difficult at a time when we're not functioning at our best, is it reasonable to think that that's going to be a positive outcome? Yeah. Right.

SPEAKER_03 21:37

So if there is sleep deprivation, what the A B therapist should really do is provide choices. Choices, maybe have a slower session.

SPEAKER_04 21:46

Maybe they just need to sleep today. Yeah. Maybe we cancel it. Maybe we cancel it. Yeah. Yeah. If there's no sleep, yeah. Yeah. Yeah. So I think, you know, that's a conversation to have again with the with the team, with the nursing team, if they're there. Or with a parent to really just be on the same page.

SPEAKER_03 22:05

How can ABA be adapted to handle medically fragile individuals? I actually think this is really a cool thing because we are in the home.

SPEAKER_04 22:16

Get your geek on. That's right. As a soon-to-be family nurse practitioner in a clinic, I think that there is a limitation to what the provider can see and understand about that environment where the child lives. I think pairing the provider with the people working in the home is really important because I want eyes and ears that are there to support that child. And I think that having a partnership between a provider and an ABA provider is really helpful. But to do that, we have to find a common language. And that can be kind of challenging. Our line graphs don't fit in well with other science, unfortunately. It's just not the way that it's measured. So we have to find a way to perhaps look at, look at the notes that are on our patient's summary and see if we can put our information into that type of format to share with the physician. We can accompany our clients to their appointments if they'd like. And it can also give us an opportunity to collaborate with the other professionals if the parent would so desire. So I think that those are some ways that we can assist, but we can also keep an eye on what we know as just people of what we need to do to be healthy, right? We need to move our bodies every day. We need to drink water. We need to try to get good sleep. We need to have good social interactions that are supportive. We need to try to eat a healthy diet, right? So we can assist with all of those things in the home in a way that other providers can't. And I think that's a great opportunity for ABA to support health.

SPEAKER_03 24:06

Yeah. Sometimes I support uh transitions, like if a parent has to go in uh to the hospital for procedure, or if a child has to go into the hospital for a procedure for several days. Um, I will use, I don't want to say it's a social story, but I use I will use visual priming materials. Yeah. In which I will make the child the superhero and I'll say Super Sarah. And I'll say, Super Sarah is gonna go to the hospital, and she's gonna meet nurses and doctors, and they're gonna have a bed, and you know, or mom has to go to the hospital and you'll visit her here and there, and just really making a story for them to look at, like about 10 days out from when the hospital stay is. And I think that goes a really long way because the more they hear the priming visual, the more questions they have, and the more questions they ask prior to it happening, the more comfortable they feel. Absolutely. Get that information they need. Yeah. Like, you know, are they gonna have ice cream in the hospital? Am I gonna eat hamburgers in the hospital? Will they have dino chicken in the hospital? Like it's you know, because even then, sometimes in the hospital when the dinner comes, you're like, this is foreign. I don't eat jello. Like this is ice chips. Yeah, you know, it's like, so the food itself in the hospital can also be foreign.

SPEAKER_04 25:44

That's true. And really, there's nothing scarier, I think, than the unknown, right? So uh it gives our imaginations a chance to run wild if we don't know what to expect in the coming days. So I think that's an excellent approach of seeing here's where we're going and these are people that we'll meet, and this is what we can expect while we're there, at least takes a little bit of that anxiety away.

SPEAKER_03 26:08

Yeah. Yeah. And just having the opportunity to have the questions be answered prior in that priming, it goes such a long way towards psychological safety. I agree. Yeah. Um, how do you teach communication when a child has significant medical limitations?

SPEAKER_04 26:27

So we really have to focus here on what the child can do. Um, so we have some children that can make selections by looking in a field of two items, for example, to make choices. We have uh some children that are able to use what we would call an AAC device or an iPad, for example, that they can press or type to explain, you know, what it is that they want or what they're thinking or feeling. Um we have signing. Some children can sign to communicate. Now, sometimes the child may be um uh really struggling to communicate in any of those ways, in which case it really relies on us to identify those signs of they look like they're uncomfortable. What do I see here that could maybe change and to improve the way that they are feeling?

SPEAKER_03 27:19

Um we've done some great work. Like we've we've you know, we've done um big switches where it's like yes button and no button for them to communicate. We've also done ASL. Um, but as soon as the communication comes, it has to really be taught in a very methodical way, whatever you go for. And a lot of people say multimodal communication. So, you know, I'm gonna learn bathroom, I'm gonna learn some signing, I'm gonna have my AAC device. I'm also gonna be able to say yeah, or shake my head no. So um non-vocal cues um and communication. Yeah.

SPEAKER_04 28:01

So all of that, I think it really does depend on the child and and what they can do. And I really like focusing on on what they can do well. Um, and that will look different. Um, so it's great, I think, to teach as many skills as we possibly can until we find what it is that works best for that child.

SPEAKER_03 28:19

And sometimes one of the challenges is, in all honesty, is working with the insurance companies to get the equipment. Yes. The insurers are really can be very difficult to work with in terms of getting an AAC device, getting a DynaVox, which would be the eye gaze system. Yeah. Um, these are big pieces of medical equipment and they require active training to utilize them, uh, skill training, expertise. Um I I used a Dynavox uh to uh teach an individual and um, you know, I put on the equipment and I tried to pick with the eye gaze, and that was challenging for me to be able to move the Dynavox system with my eyes.

SPEAKER_04 29:09

And you have to be able to focus, I think, for five seconds.

SPEAKER_03 29:12

Yes.

SPEAKER_04 29:12

Yeah.

SPEAKER_03 29:13

And it it was um, you know, it it was very difficult to learn how to make that device speak to me.

SPEAKER_04 29:20

Yeah. And so sometimes, you know, we are even just working on those prerequisite skills of can you hold gaze for five seconds on something? Yeah. Right. Um, you know, we've done adaptive versions of that when we don't have the equipment to have, you know, pictures that are displayed on a field that the child can see um to use that to make selections and to communicate, um, which isn't ideal. Ideally, we would have the system, but it does take a while. Um, and that's really true of all medical equipment standards for um some of our kids with CP, um, different types of wheelchairs, uh, different adaptive equipment. It's really challenging for parents to get the things that they need. And I really wish there was a way that we could lessen that burden.

SPEAKER_03 30:08

Absolutely. Because it just seems like parents have to go through hell to get like an adaptive wheelchair. To get the basic things, or like a choir lift, take their child out of bed or their teenage son out of bed, you know. It's like it, they it seems like they have to fight tooth and nail to get the adaptive equipment. And and to be honest, it has to stop. It really does. It just does.

SPEAKER_04 30:32

It's like yeah, yeah, because the the consequences of not having those things, you know, if you're in the same position, you're ending up with bed sores in your skin, which can become infected, and then you're septic, and now we have a much larger bill and a much more dangerous outcome than if they just had the equipment to start with. So I I really think that some policy has to change so that you know the the decision is in the hands of the parent, but less so than that of the funder.

SPEAKER_03 31:05

Absolutely. Two interesting medically fragile cases that I worked in my career, one was Rhett's disorder. And RETS disorder is um a developmental disability. Um and that disorder doesn't necessarily have a long adult lifespan. It's known for having a shorter lifespan, which can be very scary. It also deals with um, you know, shutting down of some communication systems. So at 10, my patient was speaking vocally and then could not speak. And so, and then could not use her AAC device. And so we actually went for big pictures on the floor where she would stomp on to communicate. Yeah, because that's what she could do. Absolutely. And then another diagnosis that I worked on was mitochondrial disorder. And that medically fragile case uh really came with a lot of you had to have a lot of discernment because it was like he has oxygen. If he goes blue, we stop, he gets oxygen. There was many, many um nurses on that team. And for me, it really came down to quality of life and constantly examining the cost-benefit ratio. Um, because there was a perceived shorter lifespan associated with these diagnoses. It was like, well, let's do things that make him happy and engaging because you know, you only live once. And, you know, when you're working with children that are highly impacted with their oxygen level, you want them to have, again, positive reinforcing learning opportunities. Yeah. Um, and then there shouldn't be any distress.

SPEAKER_04 33:09

Yeah. And and I know so one of my favorite things about working with nature in nature is that every program is tailored to that child's needs. And it's it's nothing, you know, we're not targeting things that won't ultimately improve their life. Um, and if you take a look at the big picture and say, well, we could spend the next hour working on matching this red triangle to that red triangle, but it's going to make no difference in this child's life and they're going to be miserable doing it, it's not worth doing, right? So I think it's really important that um all APA providers take a look at what are we targeting and what is it doing for the client. And is it something that is worthy for them? And is it something that falls into the values of that family? Yeah.

SPEAKER_02 33:57

And cost benefit.

SPEAKER_03 33:58

Yeah. Yeah. Yeah. Because quality of life at a certain point, from a nursing perspective, I know from a behavior analytic perspective, I, you know, I've looked at quality of life maybe less than a dozen times on cases where I'm like, we really need to have super reinforcing positive experiences on a daily basis for this little absolutely yeah. Um, but how does nursing take into uh effect quality of life versus cost benefit?

SPEAKER_04 34:30

Yeah. So um, you know, working with older clients or older patients, for example, if they're coming in, you know, to the clinic to have their annual, or if they're coming in, you know, um for some sort of acute issue, I think it that most family nurse practitioners and primary care providers are really looking at that all the time. Um, there are a lot of interventions that maybe could be done or a lot of testing that could be done, but some of that is painful and what is the ultimate benefit, right? If it's really um, you know, intrusive, aversive, painful experience, and it's going to result in what, you know, if it's not a real great improvement in quality of life or a real great improvement in lifespan, if that's what we're focused on, um, is it worth doing? Right. So I think that, you know, in the primary clinic sense, that's where it comes into play. Now, nursing on a um acute floor, for example, in the hospital, that comes into play as well. I think uh in conversations that the nurse would have with the provider, the physician, whoever is overseeing that patient. Um, because we really should understand every medication we're giving, every intervention that we are performing, um, what is the benefit and what is the risk of not doing it? Um, and what's the risk of doing it? Because that's something that the families should really understand before decisions like that are made.

SPEAKER_03 36:04

For um people in general and and for for kids that are getting treatment and adults, um, what safety considerations are most important in the home? Oh, there's a lot. I would say healthy habits, right? Like good hygiene, wash your hands when you come inside, wash your hands after eating, clean surfaces, you know, sanitary trash procedures, um, regular home cleaning. Um for me, it's about hygiene.

SPEAKER_04 36:36

Yeah, that is really important. Certainly, um, you know, we want to avoid any opportunity for infection um or an unnecessary illness, like a foodborne illness, if you know, we're we're eating things at home. Um we certainly also want to look at where that child's space is. Are they mostly on the floor? Are they in their chair? Are they in their bed? How is that being maintained? Is, you know, from a nursing perspective, is our skin clean? Is it dry? Right? Are we rotating and not staying on the same spot in our on our back if we're laying down, for example? Um, I think if if we're immobile and we're up and moving about, are our uh electrical outlets covered? Um, are there dangerous items in the area that um our client could put in their mouth and choke on, right? So it's really a lot of situational awareness as well. Um I think absolutely healthy habits, we could all use that really.

SPEAKER_03 37:36

And then very specific safety plans for each individual in your career. So for instance, um, you know, like we talked about, you know, the child that had mitochondrial system. If if uh uh if they turned blue, you know, they need they they brought the oxygen line immediately there. Yeah. Um, other things, uh very specific safety plans. So like febral seizures have to do with seizures that occur when you have a very high fever. Yeah. So that particular safety plan would look at having an ice cube, cold bath, dunk immediately to get the fever down, right? Yeah. So very specialized, very specific safety plan for medically fragile individuals.

SPEAKER_04 38:23

Absolutely. And and also, you know, a good um tracking system for medication dosages, how much is given and when uh medication errors can be really awful. Um, so you know, making sure that things are tracked appropriately and that everyone knows exactly what is supposed to be going on. I think communication is so important from provider to the nursing team to the caregiver, everyone involved. Yeah, yeah.

SPEAKER_03 38:49

And then preparing for medical emergencies. We teach that in all our programs. And I really love emergency preparedness. That is like my jam. I geek out on it. Like I have water and backpacks and, you know, apocalypse cookies packed away, you know, and it's I really am about emergency. Uh cookie is an apocalypse cookie. A nut nutter butter. Yeah. Those last a long time. Just like spam, right? Doesn't that last a long time? But like emergency preparedness. And you know, like it hasn't failed me because I mean, you remember when COVID hit and they were like the KN95s? I was like, I think I have about 150 of those. And Sarah called me and was like, you need to give those away. I was like, no, I'm gonna use them for nurture nature because they needed them. And they're nurtured, they were nurture nature's emergency preparedness uh for like fires. And so we had KN95s ready to go because of my obsession with emergency preparedness. But, you know, these are skills we actively teach little kids is like what to do, you know, if there's a fire, if mommy falls down, if, you know, the what if situations. And we teach this both in role play and through, you know, I'm Spider-Man and, you know, call the ambulance. You know, so we'll teach it through actual play, interactive play. Um, and we'll also teach it with visuals. Uh, but there should also be constant teaching of emergency preparedness. Yeah. Yeah.

SPEAKER_04 40:29

It's important that we have things planned ahead. Yeah. Um and I think the skill set you're talking about building is really a lifelong skill set that that client should have. You know, is this an emergency? Is this not an emergency? What should I do in case of this happening? You know, um, because the worst situation, you know, is is where someone does get injured and then there is no help provided. Yeah.

SPEAKER_03 40:51

Kevin actually, my husband actually had to put his foot down because we're in Los Angeles and there was the horrific Palisades fire and the Pasadena fires that we lived through. And that was really horrific. Um, and we tried to help as many people as possible, but I was like, Kevin, we need to get the thing that makes the pool water pump into a hose to spray the house. Or we should get the fire tarps. Because I learned about the fire tarps up in the National Forest where you have to cover your wood in these fire tarps. I'm like, the fire doesn't penetrate these tarps. Like, no, I was like, we should get tarps for the entire house. Kevin was like, no, we are not doing that. And you can't get that thousand-dollar pool pumping water hose system. But I was like, but what ifs? You know, sometimes I like to prepare for the what ifs, but I mean, not to get children to be paranoid, but if there's a fire, who do you call? If someone, you know, those community safety helpers, what to do if you lose track of mommy and target, you know, like you should teach actively teach these skill sets to children. And it should be a part of their ABA program. I agree. Yeah. Yeah. But when you're dealing with a patient that is medically fragile, emergency preparedness takes on a whole new level of being prepared. Absolutely. So what does that look like?

SPEAKER_04 42:19

Yeah. So uh we talked about the medication list and having that ready to go. I think that's always really important. And having a little book would be really great with your medications, your diagnoses, your providers, um, your insurance information, all of the things that you might need should you have to suddenly make a fast trip to the hospital. Um recognizing those signs and symptoms. So you mentioned the little boy turning blue. You know, there's also little um devices you can put on your finger that tell you your oxygen saturation in your body that can be really helpful. Takes two seconds. Um, if if that's a concern, I think that's a really helpful thing to keep around. Um, and then, you know, what are we seeing? Did is he having a seizure? Um, what should we do when he's having a seizure? You know, in the past they used to say put something in their mouth, and we know you don't do that anymore because you're more likely to choke them or to have some harm occur by putting something in a person's mouth when they're having a seizure. So typically the advice is to roll them on their side and protect their head until it's over and then, you know, get them to emergency services. Um a bag, a bag ready to die. What should be in the bag? I think what should be in the bag is some change of clothes, should be any medications, maybe some, you know, um backup medications to have available. Also, those toys we talked about, right? Having some activities, some things that will make them feel more comfortable should they be admitted into the hospital, or should you have to wait in an emergency room for a certain period of time. Um, and then of course that book with the medications is really important to have as well. Uh, I think also a phone charger is a smart thing to have should you need to contact family or should, you know, for one. Whatever reason you're in the ER waiting, you need to um contact someone. Um yeah, so I I think it, you know, and it would also depend on that specific child if you know we we do have oxygen that we need to make sure we have with us. We do have um, you know, the the feeding materials, should they have a feeding tube? You know, you need all of that uh medical equipment ready to go. Um, should you have to leave in a moment's notice. And then apocalypse cookies. And apocalypse. We shouldn't really consider the this episode brought to you by Nutty Butter Apocalypse Cookies.

SPEAKER_03 44:37

But having comfort foods, it's so important, right? Because it's like sometimes it's this simple thing. It's like, oh, a chocolate chip cookie. Okay. Yeah. You know, it's like, and we talk about food being comforting for individuals. Um, next question. How can schools support medically fragile autistic students? And I think this is a really good question because sometimes they do a really crappy job doing it and they're like, we don't have a nurse at school, they can't come to school. It's like, well, that's illegal. Yeah. Like this is where maybe do better can apply a bit. I don't know.

SPEAKER_01 45:13

I I think that's probably true.

SPEAKER_03 45:15

It could, it could. Um, because they're getting rid of school nurses, right?

SPEAKER_04 45:19

They're like the first to be cut. I have a a friend that's in school nursing here at L U S D, and I think um really enjoys her work. But I think it depends on what school you are in and what what the resources are available in that school. It's sort of similar in a way, I think, to our insurance issues of, you know, there's not a lot of budget set aside for these schools. There's not a lot of support. But at the same time, they have to legally require, you know, it's legally required that they provide it. So I think um, I think having some more specific guidelines for these schools and for the team would be great. I think uh schools could help by one, being very flexible and understanding this child has different needs, which means maybe they're not going to be there on time today. And that's that's not a big deal, right? But we do need to be ready for them because they deserve to come to school. They deserve to have interactions with peers that are safe if possible. Um, I know we have some clients that receive some school service at home, um, which is usually pretty brief. Um, and I haven't heard a lot of great feedback about that system, but at least it's some sort of education being offered to our kids.

SPEAKER_03 46:35

Um, but I think what schools do the the at-home video can be problematic because it's not, you know, you're just watching a video of a classroom and is there benefit? Maybe. Maybe there is benefit. Yeah. But there is less benefit than being in the actual school environment. And I see sometimes uh kids can't go to school because certain school districts won't provide the nurse. Yeah. Um, that's when I think you need to get an advocate immediately involved or an educational attorney. Um, because usually when parents lawyer up, guess what? There's a nurse. There's a nurse, there's a walker, there's an adaptive bike for your individual, and you know, but I think I've met several parents in Los Angeles where they're like, the school said they're too sick to go to school, so they just stay home. It's like, no, get them to school and let them provide a nurse. These these parents need advocates like you because you make these things happen.

SPEAKER_04 47:39

I've seen it, it's really cool. Thanks, Sarah.