Acorns to Oaks
Raising a child is never one-size-fits-all, and neither is therapy.
Acorns to Oaks is a podcast about helping children grow, families feel supported, and care feel more human.
Hosted by behavior analysts and healthcare professionals, each episode explores the real-world challenges families face, breaking down ABA, child development, feeding, behavior, and the systems that shape care today.
We believe in individualized treatment, compassionate care, and asking the most important question first: what matters most to your family?
Acorns to Oaks
When Autism Care Gets Medically Complex
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In this episode of Acorns to Oaks, Kristine Dixon and Sarah Morrow talk about supporting autistic and neurodivergent children with complex medical needs. They discuss epilepsy, medication changes, sensory sensitivities, hospital and dental visits, pain communication, parent stress, safety planning, and why medical needs must come first in ABA.
This conversation is especially relevant for parents, caregivers, providers, nurses, school teams, and referral partners supporting children whose care requires coordination across multiple systems.
One of the most important ideas in this episode is that not every behavior should be treated as a behavior first. For medically complex children, changes in attention, irritability, rigidity, toileting, fatigue, or distress may be connected to pain, illness, seizure activity, medication effects, sleep disruption, or another medical concern. Ethical behavioral care has to slow down enough to ask what the body may be communicating.
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
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This podcast is for educational purposes only and is not a substitute for individualized clinical care.
Hi, I'm Christine Dixon, and I'm Sarah Moreau.
SPEAKER_01And you have tuned in to Acorns Tokes. Yes, welcome. Today Perfect. We are going to be talking about something that is near and dear to both of our hearts, I believe, and that is working with medically complex children. So that means kids that have a neurodevelopmental disability in addition to a medical challenge. So things that might be included are epilepsy or um cerebral palsy sometimes have some medical challenges. And then other genetic disorders as well. Yes. Which cause a lot of challenges for the family and for the child just in daily living. And it's a lot for the parent to coordinate. So we're gonna get into that a little bit today.
SPEAKER_00Yeah, and hopefully this can help. Yeah. Um, one of the things that came out during the pandemic is the entire world learned the word comorbidity. But that really means what does that mean, Nurse Sarah?
SPEAKER_01Comorbidity uh means that you have more than one diagnosis, essentially. Um, so uh, and really it's very common um throughout the lifespan to have more than one diagnosis, because not everything falls into one box. And often, you know, if you have um one challenge, then another part of your body may be affected as well. You may have additional um diagnoses and additional challenges, a lot of medical needs, a lot of medication needs, um, which really affect the day-to-day living for the child and also for the family.
SPEAKER_00Yeah. So some children that have autism or um people with autism, uh, they can have um some medical fragility around that. Because if you meet one person with autism, you really just meet one person with autism. Um, neurodivergent really is the word because uh there's a diversity amongst the diagnosis. Um so in dealing with medically fragile individuals, which we we have the pleasure of doing, it requires a little bit more coordination and care. And it it can be very stressful on the parent if your child uh has some of these additional diagnoses, epilepsy, OCD. Um, but first question: how do you coordinate autism care with complex medical needs? That's a great question.
SPEAKER_01And I think from our perspective, when we are working as behaviorists in the home with a child on the spectrum who also has medical needs, the medical needs really need to be the priority. So often our clients have nursing staff with them, and they really are the ones that are leading the charge in terms of the day and the health activities of that day for that child. So we really work as a team, we collaborate, and we also defer to the nurse's expertise on um the child's health and what needs to happen.
SPEAKER_00Absolutely. And there has to be uh coordination and communication. So when we walk into that home, the first thing we're gonna do is check in on the physical and uh status of the patient in terms of how are they doing today? How did they sleep? How's it going? What's the update? And the nurses usually do give you a good update of what's next on the agenda that they need to do. Um yes, you also need to coordinate with the developmental pediatrician. Uh, there's a lot of coordination and medication. When would be the optune time to give the medication, uh, the effects of the medication? Yeah.
SPEAKER_01So it's really important to follow um uh what is happening after that medication has been given or if there's been a medication change. Um, medications work differently in everyone. Dosages sometimes need to be adjusted. There are side effects that can occur. Uh, so it's really important to work together to know what those uh possibilities are and what we can do to mitigate any discomfort if possible. Um you mentioned the developmental pediatrician, which I think is such a big, big uh support for these families. Not everyone can have access to a developmental pediatrician, which is unfortunate at this time. So some people may have um what they call a medical home, which is like a primary care provider, nurse practitioner like myself, or uh a physician that sort of assists in helping the family, guiding them through an unfortunately siloed medical um community, right? So you may have uh your nursing team, your primary care, your speech NOT, us as behaviorists. You might have a registered dietitian if there's uh tube feed or other feeding concerns, nutrition concerns. Um, you might have a neurologist involved with medications. Um, certainly our epileptic uh patients and clients uh would have a guidance from a neurologist. Um, but it can be a lot. Yeah, can be a lot of different appointments, you know, different therapies, who's coming when, where do we go, how do we get there on time? And then with a medical complexity, you're also facing a likelihood of an illness and missing appointments and having to reschedule. It's so much, so much coordination for the parent. Um, I've had parents tell me they struggle a lot with insurance and getting enough oxygen, for example, if they need it, because you you're really allotted a certain amount. But if that changes and then that order doesn't go through, or for some reason there's a miscommunication, now this parent is scrambling to get something, you know, that will keep that child alive. So I can't imagine really the um daily stress that these people have to cope with. Um, and I know that we work really hard to try to uh lessen that as much as possible.
SPEAKER_00Absolutely. I think it's also really um ethically important to have a safety plan when you're dealing with epilepsy, and that that safety plan is approved by the nurse and by the team.
SPEAKER_01And it's so important that you mention that because everyone needs to be on the same page. If there is an emergency that occurs, um some unexpected uh adverse reaction to a medication or a seizure, or um or maybe we're having uh a major digestive problem, a blocked tube. These are things that we really have to be able to act quickly to mitigate the risk for the patient. And also to work as a team to take that stress level down, be calm in the moment and be able to take the right steps.
SPEAKER_00With medically fragile individuals, you can really see where the insurance companies and the medical model is somewhat failing patients in individuals because they don't cover everything. And they kind of say, Well, you're going to be the nurse now and you're going to do all the care, but the parents can't do all the care. And I think that's what makes me so incredibly grateful still that we live in California and that we have the regional centers in California because they at times will put together the most beautiful teams of nurses round the clock or respite for the child so that the parent can also work and provide uh the money to get the insurance, to get the treatments. Yeah.
SPEAKER_01Yeah. I've had parents tell me that they feel they have to roar to get their needs met. They have to not only be the parent and the medical provider and the advocate and the person providing all of the financial structure behind what the family needs. It's incredible how much stress these families are under. And, you know, I think that there are some resources out there and there are some supports, but you're absolutely right. The regional center does provide at least a broad spectrum of services for that child's individual needs, which is wonderful.
SPEAKER_00And the medical model at times really doesn't provide the answers or the round-the-clock care needed for a lot of these medical fragile individuals that just need, they need a safety plan, you know. You need to review the medications, you need to know the signs of distress on the case, looking for these signs constantly. So we're here, we're talking about medically fragile individuals, core morbid with an autism diagnosis, and just the extraordinary amount of care uh that needs to happen when you're doing behavioral services for these individuals, when you're lucky enough to be able to be trusted. Because it has to, it comes with a great deal of trust when you take on cases like this. And we're so lucky at Nurture Nature because we have Nurse Sarah. Um and you've been a tremendous resource at looking at the medications and approving safety plans, um, you know, when there's epilepsy and and looking for side effects of meds and, you know, if this happens or if that happens, you know, we need to stop immediately and just do a health assessment and on the spot. Absolutely. That goes a long way. How does autism affect the management of chronic medical conditions?
SPEAKER_01I think that's so fascinating because so many of our clients inherent to their autism struggle with communication. So they may not be able to tell you, I feel this in my body. This part of my body hurts. It hurts when I do this, right? So we're really relying on our own observational skills to say, hey, I know this child pretty well. And today something doesn't seem right. Um, also, we're so fortunate to have such a supportive team at Nurture and Nature. Our therapists are so prepared to go in and assess the situation. How is the parent doing today? Should I really be asking them questions or doing parent training right now? Or are they at their limit and we need to focus on something else today? Also, how's a child doing today? Are they really tired? Um, am I gonna place a lot of demands on a really tired child? I don't think so. Um also, I think that our our staff is really great at enriching the lives of these children. Yeah. You know, they bring some joy with them in the door every day.
SPEAKER_00Well, that's what it's all about, right? Bringing positivity, joy, hope, growth through positive experiences. And that's really what you want is you want to create as many positive learning um opportunities as possible. Absolutely. And so it's just all about bringing in, you know, the fun and bringing in the toys and um because some of the medically fragile individuals we serve um have severe deficits in terms of mobility. That's absolutely true.
SPEAKER_01And I think it's really helpful as well when when our team is able to uh display that progress. Because when you're the parent in the home and you're dealing with all of these responsibilities, you may miss the little things to say, hey, look, he actually did that today. And and see the what progress he's making and how fantastic he's doing. So to be able to emphasize the positive for these families, I think is crucial.
SPEAKER_00Yeah. How can sensory sensitivities impact medical procedures or hospitalizations?
SPEAKER_01Yes. So this is a big one. Um when a child is hospitalized, they're out of their routines, they are out of their comfort. We don't always know, hey, how does that sheet feel on your skin? Because it might feel different than it would to me, right? Um, also lights and sounds in hospital is a lot. Um, there's a lot of things going on there. It's not a quiet place often. So uh that can be really overwhelming for clients that are very sensitive to sound or very sensitive to light. Um, one of the things that I think about as a nurse anytime I'm walking into a patient's room is this kind of a new idea to me, um, which I heard on another podcast about texture. What do you bring into a room? Do you bring in um softness? Are you uh a sense of calm? Are you a sense of patience? Do you come in a little bit irritated? Are you maybe a little bit uh bringing friction with you when you don't need to? So I think setting your intention as to what you're bringing into the room and the type of care you're going to provide for, especially for a child with sensory needs, you know, you're you're really going to determine your success, I think, based on how you're able to interact with that child before you do any sort of medical procedure.
SPEAKER_00Great answer. And a lot of times we help children and adults prepare for these medical surgeries or testing or blood getting drawn or going to the dentist. And the preparation is really key in terms of decreasing fear and anxiety, priming. Yeah.
SPEAKER_01So I think uh the dentist is a great example. Uh, a lot of our clients really struggle going to the dentist. It's really scary for them. Um, again, you have lights, you've got sounds you're not used to, you have smells that are maybe overwhelming. And then there's just the fear of pain. Um, I think that we've done some pretty great work of slowly desensitizing the child, even before they walked into the office, you know, practicing, putting the toothbrush in their mouth. And you open your mouth and I'll put something in there and you, you know, we'll take turns so that we can um be less fearful about people approaching a sensitive area. Um and there are even some dentists that you can make a really good partnership with and practice. We're just gonna go and sit in the lobby today. We're just gonna go and sit in the chair. You're not gonna have an appointment, but we're gonna just go into the room and slowly make it more and more comfortable so that the long-term health outcome is better.
SPEAKER_00Yeah, because if the if the initial is aversive, um the child might put up resistance to going. And so um, I think what you're alluding to is like, you know, at Nurture Nature, we play doctor and we play dentist. And I know that sounds kind of naughty, but what we what we do is actually we bring out the toy kits and it's like we watch the videos.
SPEAKER_01This is what it looks like to go to the dentist.
SPEAKER_00This is, you know, to and we let them play with the tools and we let them put the mirror in our mouths, and we yeah we play, you know, dentist. And um, I think that does go a long way uh empowering the child. Yeah. Whenever you uh we like to play vet at the clinic, you know, and so we bring out the doctor's kits and they're the vet and we have a bunch of stuffies. And every time a child brings out the doctor's kit, they're always like, you need a shot. And I think that's really empowering for little ones because they're in the control position, and you know, they get to give you the shot and they're always like, Did it hurt? And it's like, ouch, yes. And they're like, put a band-aid on and make it feel better.
SPEAKER_01It's like, okay, yeah, it gives it a chance to explore that experience in a pretend way.
SPEAKER_00And also in a powerful way where they get to take the power. And so um, I do think that goes a long way in decreasing anxiety. Uh, some medical procedures you can't prepare for because they're on the spot, you know, and it's like we have to go to the doctors now. Yeah. And in that case, it's like bring some stuffies, bring some friends.
SPEAKER_01Like, yeah, and that's something that we've also done uh with our therapists, have like a go bag. If we're going to the hospital with the client, we have toys, we've got activities, we've got things that will help to make them more comfortable in a strange environment, and especially at a time when maybe it's an emergent situation and we feel like we need to move quickly, um, just to try to help ease that transition because it can be really scary for the family, but also for the child.
SPEAKER_00Yeah. We're also so lucky because in Los Angeles we have children's hospital of LA. And that hospital is phenomenal of making it fun. They have it's just it's fun for the kids to walk into. They've really done a really nice job designing that and making it uh very engaging and also very soothing. So sometimes children need to be engaged and sometimes they need to be soothed and reading those cues of distress and you know, early signs of distress are like clenching fists, uh, your fists, wincing, biting your lips, looking down, closing your eyes.
SPEAKER_01Blood pressure increases, uh, respiratory can increase as well. Yeah.
SPEAKER_00What are common medical conditions that co-con co-occur with autism?
SPEAKER_01Yeah. So commonly we'll have ADHD, could be one that is another uh condition, very likely to have an autism diagnosis. Um, we have certain genetic disorders, which can be different, you know, depending on the child, can be something that is is brand new that has never been seen before. Um, we can see uh cerebral palsy, very common uh codiagnosis, um, which can affect mobility uh and can come with other medical challenges, certainly epilepsy, seizure disorders, very common. Um also, you know, a lot of our kids are from uh premature births. And so that comes with their own challenges, respiratory issues, sometimes um of their mobility problems, digestive problems are so common in the autism community as well. So, really, it feels like an endless list. And that's true really for all of us. You know, if you think about different diagnoses people have throughout the lifespan. Um, you know, I think when you have a child on the spectrum with these diagnoses, there are additional challenges that we sort of touched on a bit in terms of sensory and um expecting certain rigid, restricted schedules that may be affected by appointments and where you have to go and what you have to do for your physical health. So there are a lot of challenges um for that community, and every child is an individual.
SPEAKER_00Yeah. So for example, sometimes you can use pymine and it can decrease anxiety and de and have a really positive effect. Yeah. You're going to the dentist today, and it's gonna be great, and you're gonna bring stuppy and you're gonna get um a prize at the end from the treasure box, and um, you know, he's gotta put stuff in your mouth, like we've been practicing, and you know, and then other times you can use primane and it can actually amp up anxiety and trying to like you're going to the dentist tomorrow, you're going to the dentist in three hours, you're going to the dentist in two hours, you're going to the dentist in an hour, and it's like, I don't want to go to the dentist. I'm the You know, so you really have to gauge from the behavior tells, take the be what we're seeing.
SPEAKER_01Um, and I think you point out something that's really important as well, and that is uh the way that we present it, our anxiety, if we're a foray, that this could be something that the kid will not like, and I'm worried about it, and the more I talk about it, the more worried you get. And now we are feeding off of one another's energy in terms of, oh, we're both so anxious. Where if we frame it slower and over more period of time, of we're gonna drive the car to this parking lot and we're gonna go inside, and people are going to be very kind, and then we'll have your teeth looked at. And after that, then we'll do something fun, right? So it kind of helps to have a picture in your mind of this is going to go okay. We're gonna do all right, we're gonna get through it, and we don't need to be afraid. I think that's really helpful.
SPEAKER_00Yeah, positive thinking. Can do attitude. Absolutely. It goes a long day. Yeah. If you go into it thinking this is gonna be a train wreck, your expectations are probably going to be met. Yeah, yeah. So positive thinking. How do you distinguish between a medical problem and a behavioral concern? This level of discernment, we we're training our clinicians on it, but it it can be tricky to tell.
SPEAKER_01Yeah, yeah, yeah. And you know, I certain seizures can look even like behavior, you know. So, um, for example, an absence seizure, which is really hard to identify because it just looks like, oh, we just looked off in the distance for a moment and then came back. Um are you just not paying attention to me or are you having a medical issue? And I think we really need to err on the side of let's rule out the medical issue first.
SPEAKER_00Always. Yeah. And that's what our ethics say to do is like do nothing until you've ruled out um medical causes or pain attenuation is what we we call it. And that that's really important for ethical practicing of ABA is really ruling out medical causes. So another really common example would be if um like a seven-year-old uh little girl starts having accidents several days in a row where she hadn't had accidents for a year. Um, that's where we would say, you need to go to the doctors and rule out like a UTI that might be causing this. You know.
SPEAKER_01Yeah. And again, you know, the child doesn't know what these feelings are, so they might not have a way of communicating. Um, I couldn't, you know, I couldn't help it. Um, so yeah, absolutely. Anytime that there's any medical concern, we want to make sure that's being looked after first.
SPEAKER_00Yeah. Pain tolerance is different in every person, correct? It is but what signs of pain might look different in autistic individuals?
SPEAKER_01Yeah. So I think uh maybe increase in irritability. Um, you know, you might you might see um more outburst behaviors, you might see increased rigidity, um, less of a tolerance uh for change in the environment. Um again, like it They may not indicate to you what body part hurts or even necessarily like grab their stomach or grab their head because they might not experience it in the same way. Um, you're absolutely right that everybody has a different pain tolerance. Um and that goes for our children as well. Uh if they do have a neurological difference, that that may uh pain signal might even feel very different to them uh than it would to someone else. Right. So it's really, I think, good to get to know your clients and get to know what is normal, what's our baseline. And then when there's something that is outside of that, then that's when we really need to collaborate with the whole team and make sure that the child is getting the care they need.
SPEAKER_00Absolutely. And that's one of the reasons why I like the functional analysis screening tool as one of the indirect assessments that I utilize during like a functional behavior assessment, because uh I think it's question nine and ten. Um, don't quote me on that, but I think, you know, we ask, like, well, what does your child present like when he's ill? Yes. And that's when a clinician or a BCBA really needs to pay attention to see like, what does that look like? Are they hyperactive or do they shut down and just sleep all the time?
SPEAKER_01Completely opposite responses from one child to another.
SPEAKER_00Yes. Looks like the doggies are joining us. BF Skinner dog. They're always welcome. Yes. Um, you know, tooth pain can happen. Uh, you know, wincing when drinking hot or colds, uh, pain when brushing teeth. Um, very important to notice all these signs of pain might look different in different individuals. How can caregivers improve communication with medical providers? Oh, that can be a challenge. I think it's important that parents prepare for the appointment and write down their questions in a book. Because in the moment, you are getting so much medical information that at times you might forget the questions that you really wanted to ask.
SPEAKER_01And depending upon the type of appointment, the provider may be very rushed as well. And you really don't have a lot of time. So having something written down is really wise.
SPEAKER_00Yeah. I I like that. Even when I go, okay, I have some questions for you. Let me take out my book here. And they're like, she has a book. A thought on the medical list.
SPEAKER_01Really important to have the medications and dosage from every provider on one list. Um, it's helpful for your appointment, but also if there's an emergency situation and you're getting help from an EMT who has never met your child, you want to make sure to provide them with that information. Yeah.
SPEAKER_00Have a book, write it down. Write down your questions, write down the current med list, um, write down like activities that you might need clearance for. Um, you know, if there's going to be sleep disruptions, how to handle that.
SPEAKER_01Yeah.
SPEAKER_00Um, if there's medication refusal.
SPEAKER_01Yeah. If or if you miss a dose for some reason, or um if you give a dose and then the child vomits, for example, you know, it's helpful to know what happened so you can communicate that clearly uh when you're in front of your provider to get assistance.
SPEAKER_00Yes. And I think we really enjoy working with the medically fragile population because it does require a stronger coordination of care and continuity of care, strong collaboration across disciplines. Well, that wraps it up for Aquen Stokes today. What a great conversation. So lucky to have Nurse Sarah here to talk about medically complex individuals and their treatment, care, and ABA and some really important things to consider. So thank you again, Sarah. Thank you. Such a pleasure. Like, share, and subscribe. Thanks so much. See you next time, everyone.