Building Autonomy in Medically Complex Children with DIR/Floortime and TIC with Taylor Anderson

EF 01:01

By way of a nerdy conversation, so there's plenty of laughter, too.

MD 01:05

In this podcast, we cover everything from AAC to breastfeeding.

EF 01:10

Ethics on how to run a private practice.

MD 01:12

Pediatric dysphagia to clinical supervision.

EF 01:15

And all other topics in the world of pediatric speech pathology. Our goal is to bring evidence-based practice straight to you by interviewing subject matter experts.

MD 01:25

To break down the communication barriers, so that we can access the knowledge of their fields.

EF 01:30

Or, as a close friend says, ÒTo build the bridge.Ó

MD 01:34

By bringing other professionals and experts in our field together, we hope to spark advocacy, joy, and passion for continuing to grow and advance care for our little ones.

EF 01:45

Every fourth episode, I join them. I'm Erin Forward, MSP, CCC-SLP, the Yankee by way of Rochester New York transplant who actually inspired this journey. I bring a different perspective, that of a new-ish clinician with experience in early intervention, pediatric acute care and non-profit pediatric outpatient settings.

MD 02:06

Sit back, relax, and watch out for all hearths growth and enjoy this geeky gig brought to you by speechtherapypd.com. [DISCLOSURE] Hey, this is Michelle Dawson, and I need to update my disclosure statements. My non-financial disclosures. I actively volunteer with Feeding Matters, National Foundation of Swallowing Disorders, NFOSD, Dysphagia Outreach Project, DOP. I am a former treasurer with the Council of State Association Presidents, CSAP, a past president of the South Carolina Speech Language and Hearing Association, SCSHA, a current Board of Trustees member with the Communication Disorders Foundation of Virginia. I am a current member of ASHA, ASHA SIG13, SCSHA, the Speech-Language-Hearing Association of Virginia, SHAV, a member of the National Black Speech Language Hearing Association in NBASLH, and Dysphagia Research Society, DRS.

My financial disclosures include receiving compensation for First Bite Podcast from SpeechTherapyPD.com, as well as from additional webinars and for webinars associated with Understanding Dysphagia, which is also a podcast with SpeechTherapyPD.com. I currently receive a salary from the University of South Carolina in my work as adjunct professor and student services coordinator, and I receive royalties from the sale of my book, Chasing the Swallow: Truth, Science, and Hope for Pediatric Feeding and Swallowing Disorders, as well as compensation for the CEUs associated with it from SpeechTherapyPD.com. Those are my current disclosure statements. Thanks, guys.

EF 04:05

Hi. This is Erin Forward. These are my disclosure statements. I receive a salary from Cincinnati Children's Hospital Medical Center. I receive royalties from SpeechTherapyPD for my work with First Bite Podcast and other presentations. I also receive payment for sales from the First Bite boutique, which I have with Michelle Dawson. For non-financial disclosures, I am a member of ASHA and a member of Special Interest Group 13. I also am a volunteer for Feeding Matters. I am a contributor for the book, Chasing the Swallow with Michelle Dawson, which I receive no financial gain. I also am a member of the South Carolina Coalition Committee with ICLDIF full-time.

The views and opinions expressed in today's podcast do not reflect the organizations associated with the speakers and are their views and opinions solely. [INTERVIEW] Okay. Hello, everyone. Welcome to another episode of First Bite. I am going to be completely honest and that Taylor and I are very tired, but we're here and we're ready to talk about one of our favorite things. Today's episode is called Building Autonomy and Medically Complex Children with DIR/Floortime and Trauma Informed Care.

Taylor and I have talked about this a couple of times together, and I'm excited to bring it to First Bite. For those of you that don't know, Taylor, go back and listen to the Mentorship for PFD podcast. We did that together. Taylor and I used to work together in Greenville, South Carolina She left me and now works in Tampa, but for those people who haven't listened to the other episode, which if you have it, you should give us a little short Ð

TA 05:45

Short and sweet. Okay. I'm Taylor. I'm an SLP in Tampa. I work at a outpatient clinic and I do home health and early intervention. I am TBRI trained and a DIR/Floortime provider and super excited to talk about how both of those things relate to Medically Complex kids today. One of our favorite things to talk about and yes, we are tired, but we'll get inspired Ð yeah.

EF 06:14

For those of you that don't know, like I said, Taylor and I worked together in Greenville, South Carolina at the non-profit clinic that we worked at. We immediately, when I met Taylor in our interview, was like, she's a good soul. I love her energy. I want her to work here. I was correct from my impression because she is a wonderful human, a fantastic therapist, and has a great intuition with her kids, which is something that I think as clinicians, we need to start to trust in a little bit more, because so much of our kids, especially our Medically Complex kids, I feel like are in tune with a lot of energies.

I vividly remember one patient when I did home health during my CF and I walked into the house and she was having a really hard day. The mom was like the weather's off like something's off with the weather. I know there's something with barometric pressure and kids that have seizures, but she was just off because she could just feel the energy of the environment around her. Sometimes if we want to connect with kids, we also have to trust in ourselves, and our gut, and how things feel.

A lot of our training and DIR/Floortime and Trauma Informed Care, which we did around the same time, was trying to find techniques and more so reasons for why we were doing what we were doing because I think Ð I don't want to speak for Taylor Ð but I do think that there was therapy that I was doing that felt good and felt right, but I didn't have all the science to back it up of like why I was doing what I was doing.

When I started training in Floortime and I started training in TBRI, it all made sense, like there's neurobiology behind what we do and why relationship-based therapy makes sense and matters. There's also evidence, the clients that we work with, and their lived experiences and what therapy they value. So, it was cool to go through all this training with Taylor and to be able to share patience, and share stories, and share experiences to bounce those ideas off of each other because these are big concepts and these are big theories. The way you implement them with each patient is so different, so you learn from every patient, you learn from every clinician, and I've learned a lot from Taylor, so.

TA 08:36

We had a very similar experience, I think, of just when we started seeing patients just knowing like what didn't feel right and what, I mean, you go through grad school and you're taught all these different strategies and approaches, and then you get out there and you're working with kids and much of it just doesn't apply or it just feels off. I think for both of us what always felt right was play, was connection, was relationships, like all of that felt good.

Then we just really both speaking that like framework and that approach to ground us and give us the research and evidence to do. I think we both had that same experience of our co-workers being like, ÒYou guys are doing Floortime. This is what you're doing. This is the direction you need to go.Ó So, it's cool that we both took it. Erin was my mentor and was guiding me in so many different ways, but we had that overlap of finding this together. We did, yeah, TBRI together too Ð

EF 09:30

Yeah.

TA 09:31

But how those complements that didn't inform like everything we did and just give us so much inspiration and.

EF 09:38

For those of you that don't know, TBRI is Trust-Based Relational Intervention that was developed by Karyn Purvis of TCU. She developed it to really support what she called kids from hard places. Had a lot of kids that were in foster care, and adopted, and had had these traumatic experiences, but really, same as Floortime, I think can be useful with any child that you work with. The reason that we Ð DIR/Floortime a lot of the training is really focused on neurodivergent children, autistic children.

Floortime was necessarily developed specifically for that population, but that's where it really took off. I remember realizing that this was also so beneficial with a lot of the medically complex kids that I worked with. How these strategies and philosophies really helped grow my sessions and really helped in understanding those children, because a lot of medically complex kids are very misunderstood, because of their differences and their disabilities. I think our very Ð people don't presume competence in that same way. Yeah, like Taylor said, the melding of Trauma Informed Care, and DIR/Floortime just made so much sense.

Today, we wanted to start with, so we're all on the same page of really defining what these things are. Trauma Informed Care is something that's being talked about more and more, which is so wonderful. It can be a very broad topic, although there are organizations that have developed frameworks specifically for that, which I think can be really helpful. Taylor, do you want to go through the principles of trauma, like what Trauma Informed Care is first?

TA 11:23

Sure. Yeah, according to the Substance Abuse and Mental Health Services Administration, there's six main principles of Trauma Informed Care. Safety is the first one. Safety is going to be the foundation for everything because we can have all the other things that are about to follow without that felt sense of safety. The next one is trustworthiness and transparency, peer support, collaboration and mutuality, empowerment and choice, and consideration of cultural, historical and gender issues.

It's really about making that paradigm shift of what's wrong with this person to what has happened to this person. Really taking into consideration that trauma can have this direct impact on all facets of development. We have to adjust ourselves in our care and services we provide and integrate all of that knowledge into how we're interacting with our patients. All of that delves so well with the principles of Floortime.

EF 12:20

Yeah. I think with Trauma Informed Care, the main goal is not to re-traumatize. The goal with that safety is to create Ð and care and purpose talked about felt safety, where it's like you may know the child is safe, you may know that nothing's going to happen to them, but if they don't feel safe, it doesn't matter. That directly impacts the way that they engage with the environment and the way that they can interact because there is not felt safety. They're engaging from that fight-flight-fawn standpoint.

The priority is then to combat that as supposed to build relationships and engage and do things that you need to feel safe to do. Floortime really aligns so well with that DIR/Floortime. I mean, if you guys have listened, you've heard, I'm sure you heard me talk about it, but DIR stands for Development Individual-Differences and Relationship. So obviously, we're looking at overall development, but they look at this from a functional-emotional developmental capacity.

Instead of these very specific milestones, how is their social-emotional development, essentially. That first piece, regulation, which is the core of so much of what we do as humans is our body ready to engage, do what we want to do for the activity at hand, but where Floortime really, really shines, I think, is in focusing on those individual differences and relationship because in order to be trauma-informed, you have to understand that child and you have to understand that family.

Floortime gives you a framework to dive into all these differences of a child that may include their sensory system, which we know can cause trauma dependent on how you perceive the environment because if you're perceiving the environment to be unsafe, it's going to make you feel unsafe and therefore can be traumatizing for you, and your body, and your brain. What's their medical history? What's their family life like? What's their language skills? What is their motor skills look like?

These are all differences that even though we're speaking to speech pathologists or occupational therapists, even though we may be focusing on a domain specifically, we need to know about all of it in order to treat that child because just because you don't understand about their motor differences, or you don't specialize in that, or just because you don't specialize in sensory, doesnÕt mean that you don't need to know about it because if you impact that in a way that makes them feel unsafe, you can re-traumatize them.

We have to be aware of all these differences. Then we have to build that relationship that our component of DIR, which is should be the core of what we do in any session. There's a quote talking about how safety and terror incompatible. Study after study shows that having a good support network constitutes the single most powerful protection against becoming traumatized. Like I said, safety, and terror, and incompatible. If we can build these relationships, if we can base our therapy off of that, that's going to reduce the likelihood that that child feels unsafe. That's why these two things meld together so well. DIR really fits under that Trauma Informed Care.

TA 15:39

Yeah. The focus of both Trauma Informed Care and Floortime, there's such an overlap there with connecting with the child, giving them autonomy, building those collaborative goals, and how we're reaching our goals with all through that relationship. We also talk about in our presentation is that there's an emphasis here on especially when we're working with young children, including family and caregivers who are on this journey with their child too, and how they are often experiencing their own trauma.

When we're working with these kids and keeping these developmental capacities in mind, we want to really consider what is meaningful to these kids and not Ð sometimes I feel like we can jump to these really isolated skill sets, or goals, or benchmarks positions might have, or like you mentioned milestones. What Floortime has to do is just look at it from a whole different perspective and think what is relevant to this child? What is that interest for them? If we are going to be Trauma Informed, we are openly discussing this.

With our connection by using that relationship piece and using our connection with the child, with the family. We are encouraging their autonomy and helping them voice those unique goals and needs and having that be a super collaborative process where autonomy, and connection, and relationship are all at the forefront and those other skills and things, those comes that we want to build the capacities.

EF 17:04

Yeah. Looking at both these things, things that Taylor and I pulled out as some of the most important things to keep in mind are to connect with the child, to give them autonomy, and to build those collaborative goals. Really, and to connect with the child and the family, because we know that sometimes and Floortime talks a lot about this, or that we have to look at the child and the caregivers' individual differences because sometimes those aren't aligned and sometimes that can be traumatic for both the caregiver and the child when they don't have this match of how they're engaging with each other and how they're connecting. But I have to connect with the child and the caregiver to learn about those differences as well.

From an autonomy standpoint, and I think this is where we can go in a little bit more to like specifically with the medically complex population because where I am right now, I work with a lot of very medically complex kids, both when they're in the hospital and when they leave the hospital. There's a lot of trauma that comes with that. There's a lot of studies on the PTSD that comes both with caregivers and children from their experiences in the hospital, from their experiences of medical trauma because we know for the most part, if we have a really medically complex child, whether it's Ð

I had this really, this experience I specifically remember, I mean, I have patients where the child went into cardiac arrest multiple times, and caregivers had to do CPR on them. That's incredibly traumatic, or if it's a scenario where just being in the hospital can be very stressful because people are doing things to you that they have to do to save your life, but you don't have a say in it. So, for a lot of these kids, our first goal needs to be to help them build autonomy because if you don't feel that you have control or a say in your life, that can impact just not only how you view yourself, but your overall mental health. I know that Taylor introduced me to a book that I think is really great.

TA 19:18

The quote I love saying the book, Being Mortal by Atul Gawande. ÒAutonomy makes each of us responsible for shaping his own life according to some coherent and distinctive sense of character, conviction, and interest. It allows us to lead our own life rather than being led along them, so that each of us can be what he has made himself and [inaudible 0:19:39] in.Ó This book is about maintaining autonomy in end-of-life stages, but the discussion around autonomy just kept making me think about medically complex patients and how are we starting there? How are we building their autonomy at the beginning? How are we helping them write their own story when so much of their life is not within their control?

When we think about mentally complex kids, their freedoms are limited and independence is not possible in so many ways. Their lives can be inherently dependent on others. A lot is not within their control, so how can we as their therapist still find ways to give them a voice and a choice, the good place to talk about autonomy versus independence? Because those are two different things that are sometimes those terms can be completed and used interchangeably when they are different.

Autonomy has to do with the person's abilities to base on intrinsic motivation and drive whereas independence relates to the level of support, the resources, and the care that's required for that action. It is our job to place our value on autonomy over independence because that's going to support a child's confidence, or development of self and really get at that. Their ability to make their own choices and build their autonomy.

EF 20:57

Yeah. We talk about this with AAC all the time where we want a robust communication device that can allow a child to say what they want to say when they want to say it, as supposed to saying something independently because if we're looking at a device dependent on their motor skills, it might be easier for them to say something if you have less messages on there, but if they're not able to access everything they want to communicate, it's going to be better for their autonomy maybe to have a little bit more support to be able to communicate what they want.

We have to look at that overall standpoint just because the people working on communication doesn't mean that that's where that awareness stops because we're also focusing on the way they engage with the world and the way that they interact with the world. Cognition is a part of what we do. Communication, I think is core to this as well because the way that communication builds, it starts off as involuntary behavior.

If our goal, we've talked about how medically complex children are trying to build that autonomy. We're trying to build that quality of life for them to be able to do what they want to do, because the other thing we have to think about is a lot of medically complex children we work with. It is a little bit more difficult to create that safety and to understand what they want sometimes, because if they have motor differences where they're not able to engage with things in the way that they may Ð their planning might be difficult, their proxies might be challenging, how they can motor plan and act out something they want.

It's also sometimes difficult to understand their sensory systems because children that a lot of children are medically complex that maybe have spent a lot of time in the hospital didn't have the opportunity to engage with the world, play around with their vestibular system, or their proprioceptive system, or their tactile system, so they may be a little arousal, but that doesn't mean that they don't also want to engage in their sensory system at a higher level.

I think a lot about Ð I have a kid that I worked with who had an accident trauma. I think at this point he was sitting up assisted, so he still needed support for that. We were working on the eye gaze device, he had a feeding tube, we were taking tastes of food, but he really likes this tomato chair, he felt safe in it, and he had one that had wheels so you could push it. I remember I wanted him to understand that he had some control over his body because if he didn't feel he had control over his body, it was really going to be hard for him to feel like he had control over his world with his communication, which some kids can work on it in other ways, but this is why that body autonomy piece is really, really important.

We spent session after session after session of him like I would first push him in the chair, I built trust with him because I wanted him to feel like he could say no if he wanted to, but I would push him in the chair. Then I would put my hands up and he would push his feet against my hands because he really liked to talk with his feet, which I feel a lot of our medically complex kids do, because it's like a safety thing. Then he started to sign more with his feet and I would push him.

We started to just build this like, I have control over what happens to my body. Whatever way we can do that, whether it is just building that communication for them to tell you what they want, but we need to understand their cues and we need to understand their communication to be able to do that.

TA 24:40

Yeah. So much of that. I mean, you started with the relationship, you started with trust that was going to be the foundation to any progress you were going to make. I think going back to that piece about support, not being the thing that we're trying to take away. I mean, we want to give a kid all this forcing and some engage in whatever way they're able to and not prioritize that independent piece. We talk a lot in our presentation about how we're honoring all forms of communication. I love that, he was using his feet. He's got a lot.

Yeah, how is the child in this interaction with whatever supports they're using? How are they with me right now? How are they showing you, what are their cues they're giving me? Like being super in tuned with that, like what are the very subtle things? Because sometimes they can be so subtle that I'm picking up that's telling me that this is, I'm enjoying this, or this is uncomfortable, or I want more of this. How are we using that and building from there?

This can often get back to that piece about incorporating family and caregivers and getting to say their kids best. What does it look like when your child's engaging with you? When do you feel the most connected to them and why? What does that look like? Given whatever their individual differences are, whatever limitations they might have, what are your cues in that moment? Just things super in tune and responses to that. That is what Trauma Informed Care and Floortime for a time are about.

EF 26:06

Like I said that communication starts from that involuntary behavior, which happens when kids are infants, like when their hands play out, or they grimace, or something that you see a facial expression, like that's a baby telling us that something's uncomfortable and we have to honor that to teach them that your body, your facial expression, all these modes of communication of power. Then it builds to more voluntary behavior. Sometimes a lot of this comes from the communication matrix, which I really, really love and use a lot when I do assessments because it helps a caregiver see more what the child is doing versus what they're not doing.

Some of the non-traditional communication that they might talk about might be like sometimes a kid is trying to gain your attention or wants to say, ÒHeyÓ and they hit you, which is not something that we encourage, but that's a way that they've had a response to before, so maybe this is non-traditional. I remember, I had a mom of a girl with breast syndrome. We were working on her eye gaze. She was struggling with finding the right program that this probably liked. Mom was like, ÒI really just want to hear her say, I love you.Ó I said, ÒI value that. I hear you. I see you. Every caregiver wants to have their child say, I love you, but I just want you to know that every time she seems to feel anxious or something happens, she puts her hand back and touches you and makes sure that you're there. That's also her saying, I love you.Ó

A lot of, especially from a communication standpoint with a lot of the kids we work with, it's validating that caregiver, and what they want, or their hopes for their child while also validating the child and their communication to the caregiver, which is building attachment. When we do things like that, that's building attachment. That's a big piece of that relationship piece as well, because attachment starts in infancy when, and it's usually starts with, it starts a lot with feeding, where child makes rapid eye movement, starts to root, caregiver feeds the child. It's beautiful, wonderful. They talk to each other and they're beautiful, and then they've had this lovely interaction, but for a lot of the kids that we work with, that's not what happens.

This back and forth, this attunement, this attachment impeded by medical ideologies, or need to be in the hospital, or being in the NICU, or certain situations like that, so now, we're rebuilding that sometimes with communication. We're helping caregiver understand child, we're helping child understand the caregiver, and we're helping them find that place where they both feel safe together. That's why it's really, really important, the language that you use and how you talk about a child because that can directly affect the way that a child sees themselves and a caregiver sees their child.

TA 29:04

Right. I was just thinking some things that can get in the way of that attunement that you're talking about. There are those medical challenges, but then there's also the mindset that comes with that. I think we often get stuck in that medical mindset, and that can very much interrupt this whole process of attuning and building that relationship. When we get stuck in, I think Borton talks about how we want to put aside our views about how a child should interact and focus on how they are interacting. So, that example with that little one mom wants her to say, I love you, that she is saying it in a different way. We want her to say it this way, but how can we shift our perspective there and see how she was already doing that? She's already showing us that.

Just getting out of that headspace, trying to fix these differences and change them and get to the next milestone, whatever it is, instead, focus on what are they already doing? What are they attuning to? What are their interests? What are their Ð how are we providing them opportunities? How are we providing access and developing appropriate expectations based on all those things? What does success look like for this specific child in this moment? It can be a lot of conversations with people about making that shift in perspective to the [inaudible 0:30:16].

EF 30:19

We I was going to go two different ways with this. I think part of it is we have to also take the time to really understand that child and their subtle cues, like Taylor said, that's when we're going to ask the caregiver like, ÒI saw them do this. What does this mean to you?Ó What has this Ð I'm going to presume competence, which is a big aspect of both Trauma Informed Care and DIR/Floortime is I'm going to Ð because I think I remember being in grad school, I don't know why I vividly remember this, but like we would talk about some of the assessments that we would do. It would be like caregivers might think this is a word, but it's really not, so make sure you know whether they're actually saying this word or not.

Ever since I've been on grad school, I'm like, ÒYeah, I'd rather believe the caregiver and acknowledge it as if they were saying it, because that's how they learn language.Ó I'm going to presume that they have these capacities that when they're saying something, it is what caregiver is telling me it is because I trust them and they know their child. I'm going to be much more responsive to those cues, especially initially.

I do this a lot, especially with feeding, because when you work with a child that's really medically complex and you're doing something like feeding that's so vulnerable. If they move their head back, or they turn their head, or they do something really subtle, that looks like a subtle grimace. I'm going to initially assume that's a refusal. I'm going to honor that refusal, because I want them to know that what they do has power and that I value it, because how many times my kids that have been in the hospital, did they grimace or say no, or do something and something still had to happen to them.

We're rebuilding all of that negative experience that has happened before. That's no one's fault, but like this is really, really important that we're continuing to honor it. We have to do it over, and over, and over, and over again. Sometimes my sessions with kids that have been in the hospital will be really short initially, because the child will tell me that they're all done. I would rather acknowledge the refusal to continue to push them and have them not trust me.

The number one thing I want a child to be able to do when I'm working with them, whether it's feeding or not, is to be able to tell me no because we know that medically complex children and children that have disabilities are at much higher risk to be taken advantage of. So, that's why body autonomy is also really, really, really important because we have to teach them that they have control over their body, that they have a choice, that they have a voice. To me, that's like number one, safety, just trust all around, like we should be focusing on that right away.

TA 32:54

Can you talk about that concept of dignity of Ð

EF 32:58

Oh, yeah. Emily Starling, who does Neurotwist podcast. She's wonderful. She was on our podcast. She's the one that was talking about this term. I was like, ÒOh, this is really, really important.Ó Also, really frustrating that in grad school, we don't get as much training on disability as we really should, like we were talking on the podcast and she was like, ÒWe don't learn Ð I feel like the term disability was not something that like we talked about in grad school.Ó

When like, in all the training I've done, it's like disability is a part of humanity. Emily made a good point. She was like, disability is something that like no group or race, you can't escape it. It can happen to anyone. So, that dignity of risks is talking about how every person, including those with a disability, has the right to make informed choices and take reasonable risks to learn, grow, and have a better quality of life. How this dignity and autonomy is so important for self-esteem and for life satisfaction.

We have to balance these risks in their effort to do things and offer these choices, offer these opportunities to build relationships, to make decisions, because that's also how we learn, like we know that praxis and communications developed by I have an idea, I execute it, I get feedback, and then I gain insight as to like how I'm going to do that again, but how many of the kids we work with, with better medically complex and have disabilities, do we take away so much of the opportunity for them to learn? We take away so much opportunity for them to make choices.

I'll tell caregivers a lot, think about A, how many times you say no to a child in a day. Think about B, how many choices you make for them that you don't even realize that you're making. Now, think about how many opportunities you have to give them a choice. I mean, our kids are six-month-old that I'll put two jars of baby food in front of them and be like, ÒWhich one do you want?Ó They may not know what other one of them are, but like they got to make a choice. Then they got to Ð and how many opportunities are we missing to learn about children by not giving them a choice?

I think even about like AAC. Initially, when we start, we might put music or put movie on there, but like we haven't given them a choice of which one they want to watch, but yet they can go and YouTube and figure it out, so why are we not Ð that's where that autonomy versus independence comes in, because we're only putting music on there, because he wants them to be more independent with it, but why aren't we giving them more options and then opening up their world?

It breaks my heart to think of all the ideas that these kids have that like we just, some kids might have these ideas and we might have to act it out for them, or we might have to help support them to build this thing that they want to build, but that's when we have to understand their individual differences to support them, like the child, my favorite story, he wasn't medically complex, but I think about his brain and the child I talked about in every lecture where he came in with a piece of paper and wanted to be the Pixar lamp.

We took 45 minutes for him to explain to me how to help make him the Pixar lamp. It was so beautiful, this idea that he had, and he did have apraxia and some difficulties communicating what he wanted, but like we were able to work through it together. How can I help expand the world of a child to be able to make choices so that they have a right to do all of that too and they have a right to make mistakes?

TA 36:35

Yeah. I think that's a big one too. Providing that opportunity to say no, like you talked about earlier. Honoring that protest, honoring those cues that I maybe don't want to do this, or what I see often is like a limited amount of choices, like making a lot of assumptions about what a child might be interested in and giving them a small array of options here, like do you want to do this or this? Well, maybe I don't want to do either of those things. How can I communicate that to you? Like always finding a way to give a child an out, thatÕs a huge part of building autonomy and dignity and to be able to say, ÒNo, I don't want to do that. I don't want to participate.Ó And us honoring that instead of finding ways to force it, or encourage it, or help them comply. Can we instead just say, ÒOkay, this is their choice right now and I can honor that.Ó

EF 37:27

I had this conversation with a mom today whose child was a little bit older. I would typically start a device with because this child had been told that they weren't ready for a device before then, which we know that that's not true. I remember she was saying that they tried it before and she just said, ÒI donÕt want to use it.Ó I was like, ÒWell, first of all, give him a minute of modeling.Ó Just like model and see that you just put something in front of a kid, and then they don't know how to use it and you're like, ÒOh, well, he's not ready.Ó You're going to just put or you're going to have me read Spanish and expect that like Ð give me a second to learn it.

Then also, I was like they probably didn't put stuff on there that he wanted to say, because this is the other thing that I had to shift in my mentality of work on communication because yeah, I wanted to provide what a child may want to communicate on the device. Then I think I would get frustrated because I wouldn't see them using the device to communicate these things, but a lot of them are things they were already communicating. There were things that they could point to. There were things that mom knew they wanted.

We have to remember that if a child has not access to a blend of communication, I mean, before, they're finding ways to communicate it, in other forms of augmented communication, if they're non-speaking, if we're using this specifically, or they're partially speaking. Let them keep doing that because it works. Then the goal of the communication device, I think should be to help them communicate things that they aren't able to, to help expand their world and to maybe to help them communicate with people, other communication partners that may not be able to read those cues. I think I used to have caregiver and courage communicating these things that they were already communicating. Then it's just frustrating for them because they Ð you know what I mean?

TA 39:23

Yeah. You said it's in our presentation. I love this quote of yours, you said, ÒWe tend to use less language with the ones we love the most because they already feel understood.Ó

EF 39:33

Yeah. I think I made that up.

TA 39:35

Yeah. It's great. It's brilliant. Because it's like, you already know what I want. I'm telling you in all the ways that I've been telling you for all this time. Now, you want me to say it this new way. That's frustrating. Kids know when replacing it. It doesn't feel authentic like, why are you having me do this? It can really create a risk in it, in a communication exchange.

EF 39:57

Yeah. Like, and itÕs care because they say all the time. They'll be like, ÒWell, he's not using his device at home.Ó I'm like, ÒWell, they know you understand them. That's okay.Ó But then we're also working with kids that are older. They've had years and years of being misunderstood, and then we expect that we're going to come in as the expert and they're going to just like relate to us and do what we want. It's like, no, you have to earn it. You have to earn it. They're not the ones bringing themselves to therapy. They don't always know why they're there, so for you to just expect that a child's going to just do what you want them to do is unfair and unkind to think that like you know the child right away.

I'm spending most of my sessions getting to know the child and getting to figure out what they like, but that's the thing with a lot of the kids we work with that have disabilities and have gone through medical trauma is like sometimes we have to present them with things because like how was a kid supposed to know if they like something if no one's ever shown it, or like no one's ever tried, or no one ever has allowed them to have an experience?

We shared a patient that like he used a wheelchair and caregivers would take him like tubing. They'd find a way to help him go to Ð like it was amazing the things that they would like help this child do, because like they wanted him to have this experience, which I think is so wonderful and to allow him to make mistakes, like kids have a right to try something and have it not worked out, and then work through that emotion like we can't protect them from everything either. That's also not fair.

TA 41:33

We don't get to decide what their interests are and what they want to engage in, what feels good and motivating to them. We don't decide those things as their providers, but what we can do is get to know who they are and all their individual differences and make suggestions, create opportunities, building on what where they already are at and help them grow from there without like introducing things that are not going to fly. Then just continuing to push it and ignoring all those.

Yeah. I can come back to that, like using your relationship, attuning to where they're at, being responsive. Yeah, and just meeting kids where they are and honoring that autonomy, respecting their ideas. I think respect is a big one because if we're not using all these principles to guide our approach, you can get into the territory that I think can be very disrespectful.

EF 42:25

Yeah. and I think like we talk a lot and floor time really promotes the idea of like Weight, Watch, and Wonder. Being very child-led, being play-based to actually play. When you're working with some kids, a lot of what like Taylor and I do is mirror what they're doing and try to see where those ideas are coming from. What can be tricky with some kids is that if they're really low arousal and they're not the ones to initiate that engagement with their world, you have to pick up on very, very subtle things.

For example, like I think about, I have one kid who I see, he has Down Syndrome. It's only been pretty recent that his motor skills have really grown and he will sit on his own, he's starting to crawl more, and then hold to stand. He really likes nursery rhymes and we started doing, Row, Row, Row your boat. I'd watch him and he'd like rock a little bit, like you'd see such a subtle rocking when he like, liked a song, but he didn't quite know how to like move his body a little bit more. Other kids might like really, really start moving, trying to get that vestibular input, but he didn't quite, I think have the confidence to do that, because he had been developing his just being able to sit up on his own.

I noticed that very subtle movement and we had started to build relationships, so because I had built a relationship with him and he trusted me, I could start to include the Row, Row, Row your boat. If he gave me his hand, I start to move him a little bit more. Would I do that when I initially met a kid? No, because they don't trust me yet, to partly move their body, but because I saw this very subtle movement and I knew he trusted me, I started to try and like have him hold my hands, so that he could move his body even more. Which when he got that movement, you've heard more language, because there's a lot of research on vestibular input and language development, he needed to trust me first.

So, for a lot of our kids that maybe don't have the confidence with how they move their body, we have to play a bigger role, but we have to be very cautious with it. We have to pick up on very, very subtle things like a kid might just look somewhere at something and you may be like, ÒOh, I saw you look at that toy. Let me grab the toy and see if this is what you wanted.Ó Or they may like gesture, seems like all of them, but you're not really sure. Oh, I'm going to acknowledge all then. Then you can be wrong and you can be wrong the more that a child trusts you, the more you can be wrong. That kid that I talked about that we made him into the Pixar lamp, it took us 45 minutes, but he trusted me, because he knew I was going to work with him to get that idea. So, how do I follow their lead while also helping expand that zone that they may not be able to reach on their own? If that makes any sense.

TA 45:28

Yeah. Just keeping in mind that for some of these kids, the way that they might engage and relate to us is going to be different. How cool is it to really be in tune with that and be able to Ð for the time we talk about circles of communication, like for you to get that closure on the circle, a child might not experience that much when you are tuned in to their subtle keys and you are seeing it through, they get to see, ÒOh, okay, you got it. You're with me. You're responding to me.Ó That's going to further understand that trusting relationship that you have.

EF 45:59

We might go into a little bit like to give some specific examples. DIR/Floortime, like we talked about has the functional, emotional, development capacities. These are things that are so helpful. I think, especially with medically complex children to be able to have a base for you to look at their development that is more holistic, that can span so many disciplines. The ones that I think we talk about the most with a lot of our kids are, I mean, they go up to if you really want to, the capacities go up to like 18 or something, I think maybe 12, 18, some capacities like adults don't have, like gray area thinking, like you know the people that can't think, the people who think in black and white, which is fine.

We might go through like a couple examples of how we do this. Working within those capacities, but just to review them. FEDC 1 is Self-Regulation Interest in the World. How am I preparing my body for what it needs to do? It doesn't always mean calm, not this regulated, not overwhelmed, not anxious and fight, flight, freeze, like we have to be out of that to be in that regulated state. FEDC 2, is Engaging and Relating. Am I connected with someone? Do I feel engaged with them? Is there this idea that we're here together and showing that interest together? FEDC 3, is that Intentionality and Two-Way Communication. Like Taylor was talking about those circles of communication. Am I building this back and forth with someone? Really what that's doing is again building that, ÒI'm here with you.Ó Like, let's have this engagement back and forth, so that we can understand that we're here together to then build what FEDC four is, which is Complex Communication and Shared Problem Solving. This is a huge part of development. I'm communicating bigger ideas that are more symbolic, trying to work with you as humans.

We need to work together to help our ideas, like to help create things, to help grow things, like we have to work together. Children in order for them, they have these imaginations like you and I pair with each other to solve this problem, build this thing, create something. That can expand to show so, so many other things, but these can all be tricky when we have kids that have differences, that have disabilities that process things in different ways.

FEDC 1 with the Self-Regulation and Interest in the World. This goes back to like the sensory component as well, because a lot of our kids that we work with that are medically complex that maybe have lower arousal may want to engage with the world in a different way, but because of that low arousal, and because of their lack of experience with engaging with the world with their bodies, they may not be ready to do that. We may have to help with those sensory support. Are there ways we can change the environment in order to help them feel safe? Are there ways we can use our presence?

We have to think about the way we talk about something. The way we interact with them. Is that helping or hurting the way that Ð the safety that they feel and how comfortable they feel. I mean even, remember I worked with a kid during my CF that like I had scrubs on and he had such a negative experience in the hospital that anyone that came up with scrubs would send him into he'd be so upset. I wouldn't wear scrubs when I went to see him, because I wanted to make sure that he felt safe and he felt comfortable.

Regulation can look different too in these kids, like in talking with the caregiver to help them communicate on what they're noticing in their child and what difference they're noticing and these very, very subtle things that we can see. But you need to feel regulated in order to engage with the world in order to feel things about your body, in order to feel your hunger, or if you have to go to the bathroom, or things like that, like this is the foundation for all the things that we do.

TA 50:02

Yeah. We're in that regulated state. I think it's important that these aren't a lot or that we're climbing up. These capacities are always happening interchangeably at all times, but when we're in a more regulated state we are better able to engage and relate with the world around us and that is FEDC 2. When we think about this in the context of working with mentally complex kids, it's the piece that's important here is keeping in mind that the way they might be engaging in relating with the world might not be what we expect, or they might not have the capacity to reach for a caregiver to point to something to share an idea and move closer to you, to hold eye gaze. Those kinds of things. Again, coming back to like honoring all forms of communication here and attuning through their unique communication style, and how they are relating with their ideas, and how they are making connections.

This is also, this capacity I think about autonomy a lot because this is where we really do want to set aside our agenda attuning to what's relevant and meaningful to them within this activity, within this interaction. How are we entering their world instead of pushing them to enter ours because this is where that engagement and that intimacy can occur when it's their idea and it's not something that was forced upon them.

EF 51:20

We talk all the time about circles of communication which is like a floor time term in FEDC 2, we're building that two-way communication. The goal is to respond to every communication even if it may not seem purposeful initially because that's how we build this purposeful communication and to know that the way a child communicates may change and may change every day, like based on either internal or external factors. So, like I have kids where when they're off whatever they have medically going on, they may need to use their communication device more, or they may not be as verbal that day, or they may rely on other ways to communicate, because of the way that their body feels and that's okay.

You can't go into one session assuming that you're leaving off where you ended the last session because so many things happen in between that, that's important to know, but a lot of when you build the Ð and I tell clinicians too like Floortime does talk about, they call it lingering longer at lower levels which essentially means, I think we have this idea and I do it all the time where I like see a child master something and I'm like, ÒOkay let's add something. Let's add a challenge, let's expand on this.Ó When really, they need to just sit in the success for a while. They need to sit in this back-and-forth communication with me before I bring in a problem, before I bring in a new toy before I add another communication partner because they have to build confidence in this. That's also okay.

The way that we can just help them feel really, really comfortable like, ÒI'm here with you. I'm going to respond to you. I'm going to figure it out. We're going to keep going back-and-forth.Ó The back-and-forth can look like a facial expression, a touch, a vocalization, a word. It can be so different, but that's also how we communicate as adults too. I mean I can have full conversations just with my eyes, so keeping that in mind too, like don't feel like you have to go add something just because they've done one thing.

TA 53:32

Then we get into a FEDC 4. Complex Communication and Shared Problem Solving. I think itÕs such a fun capacity to work with them, because at this point like our communication circles are growing. The complexity of our interactions are growing. We're expressing ideas. There's more creativity flowing. It's like when all those ideas are happening like Erin mentioned with her patient with the Pixar lamp. It's all happening here. How are we working together? How are we providing choices? Sometimes this can get tricky, because the possibilities are endless when we're playing.

I just thought of an example I had. A little girl came in recently, which she was singing happy birthday. We had all these thoughts and ideas about birthdays and balloons. I wasn't quite sure what she was trying to make happen, but she was so patient in that they made where we had these back-and-forth exchanges. I brought in balloons. We started playing up balloons. We had guests at our party. We slowly pieced this together based on her idea and us just being patient with each other and problem-solving that.

It gets back to like, okay we're following their leads, but we're also trying to give some structure and just bond in different ways, and push and pull. I think four times they talk about, [inaudible 0:54:46] stretching the rubber band just enough so it doesn't snap. So, we're challenging each other, but we're staying within that zone of proximal development. We're staying in that sweet spot when things are flowing and because we have that regulation of piece, because we're engaged, because we are connected and in tune with each other. We can see these ideas for fruition which is always really exciting and fun.

EF 55:14

Yeah. I think to play around, like language is the way that we can play around with so many ideas, right? Like we have conversations about my goal is this or I really want to travel here. I really want to do this. We have all these conversations and you can use imagination just through our language. For kids who are building their communication just as we need support from like maybe a communication device or sign language or something. We may need more support just from a like processing of ideas or motor planning.

I also encourage clinicians in that presumed competence, like I think of one kid that ice treat and one day, he just said like broccoli, like he was talking and he said the word broccoli came out. Mom and I were like, ÒBroccoli.Ó I had filmed this for my Floortime course, and I went back and watched and he had like a tree that looked like broccoli, but we didn't Ð we hadn't connected that, and then he had recently watched a show where a child ate broccoli where it seemed so out of left field what he said, but it did make sense when we looked back and it he was connecting these ideas.

What we should have done was really acknowledge that a little bit more and maybe what we could have done is like shown my picture of broccoli or like tried to connect to see, like what his idea was, just as we support communication by giving these supports. We're supporting communication that way, it's just these other ideas, but we're helping to connect like, are we here on the same page. We're problem-solving this together. That's when I love AAC too, because it provides like more opportunities for kids to play around with like, ÒOh, I didn't know this was a thing I could sayÓ or ÒI didn't know that this was something that was available to me.Ó

Maybe it's something that like, ÒWe can't go to the zoo even though you asked for it.Ó But I need to acknowledge that you said that you went to the zoo, like always acknowledging any communication that they have, because any other kid could scream there and be like, ÒI want to go to the zoo. I have a fit about it.Ó So, just as that, like any kids deserve to have that moment of wanting something that they can't have. That dignity of risk too. I think caregivers are nervous too of like I don't want them to want something that I can't give them, but that's okay, like that's how they learn too.

Do you have any like, three of like the most important things to think about when like Ð if someone was like, and I'm trying to think about what my answer would be too, like if someone was like, ÒOkay, I'm don't typically work with medically complex children. I'm getting some on my caseload. I feel a little overwhelmed.Ó Like what are some simple things that I can do to just like help build that relationship or help like inform my sessions.

TA 58:09

Yeah. I think slowdown is a big one. Slowdown in all the ways, like with your speech, with your movements, with your goals, like with everything, just take a minute, take that time in your sessions to observe and just to be there with the kid and just really be present. There's so much happening that we miss when we're just like, just full steam ahead, just going in there trying to do our job. There's so much going on, so just slowing down and being quiet. Wait, letÕs wonder to bring back Floortime. Another thing I think is just really prioritizing that caregiver or involvement to listening to family. They are part of your treatment as well. They're a huge part of your treatment, include them, listen to them. Let them guide you and teach you in all the ways.

What else? Let's see. I think trusting yourself can be a big one, like really getting in tune with how you're showing up and we talked about this a lot just trusting yourself that you are the right therapist for this patient and you can figure it out. I think, I know when I first started seeing medical complex kinds, I was very overwhelmed. You always brought me back to that space of like, you can do this. It's okay to not know. It's okay to say, I don't know and I'm going to find out. I'm on your team and we're going to figure this out together. LetÕs just be humble and trust that you know enough to get you to the next step, and trust that process. Yeah, what are your three?

EF 59:54

I think that first would probably be, like you said about listening to caregiver similarly. I was listening to what was the name the Rare Ð Serena from Playspark was on this podcast that I have listened to before. It's called, The Rare Life. It's a mom who has a child with a rare diagnosis who listens to caregivers, and hears their stories, and talks about her journey. I think listening to a family story and the child story is so important, because, yes, I think the Neurodiversity Affirming Movement we are pushing towards a social model which is so important, but with these medically complex kids, like they live in a medical model, because a medical model has also saved a lot of times, may have saved their child's life in one way or another. So, it's harder to find that balance between those two.

Listening to their story and helping humanize the experience, because, yes, there's wonderful medical providers out there, but unfortunately there's a lot of medical providers that don't humanize the experience that don't talk to the child, that don't acknowledge a child when they go in the room. So, when we start to really see the child and see the family and let them know that we're trying to learn who that child is I think that can be so valuable for any caregiver and helps them trust you. Then yeah, you can say like, ÒI don't know.Ó

With a lot of the kids I work with like, I don't know what their communication is going to look like or what their feeding is going to look like. I have so many kids I work with, but like, theyÕll get a diagnosis and they're like one of 15, like one of 50. I think that's the other thing. We have so many diagnoses that are so much more rare that we really have to trust our gut and yes, understand what's going on medically, especially if we're doing feeding, but at the same time, like we don't have a textbook about what's going to happen, so we just have to open the door for that kid to show us what they can do and what they want to do. I think it's really, really important.

I think really understanding, like you said your presence being authentic, because kids know when you're not. Kids know when you are being fake or when you're pretending to like something when you don't, or if you're not with them, a lot of kids are very intuitive. So, being honest, being open. Then yeah, I think learning to trust yourself. Learning to ask questions, and not being afraid. I think I'll be the first one to ask a caregiver, like remind me of this, because I'm trying to put all these pieces together. Be open to the possibility that like you missed something or that like you're going to keep learning about this child and it is a constant relationship building.

It's not to say, my least favorite thing is like, ÒOh, I'm going to spend the first couple sessions building rapport, and then we'll work on stuff.Ó It's like, no it's a constant building of a relationship. Get comfortable with the uncomfortable, because when you build relationships with families like you're going to have moments where like they cry in your room or you're going to have moments where like there's hard days and you're going to have to feel the emotions. Part of being I think a good therapist is being comfortable with those emotions and being comfortable to show some vulnerability. Don't put your stuff on a caregiver, but like showing them that you're human too, I think makes them feel safer.

TA 1:03:36

Prioritizing that connection with parents, not just our caregiver, not just the child.

EF 1:03:43

I always say, like kids, and then I'll be done, because we're over time, but Michelle and I shared a patient that we talk about that she came home from the hospital in hospice. They like did not think that she was going to survive. She had a rare CP, and she had multiple strokes. One day, like she didn't have her gag reflex, she was struggling having all these reflexes and one day she took a toy sword put it down her throat gagged. Her mom called Michelle and was like her gag reflex is back, which I'm not one to like, you need a gag reflex, but like this was just indicative of these things that were happening with her brain.

I mean by the time I started seeing her, because I saw her as a student and I saw her as a clinician. She was running, she was talking, she was eating everything. It's not to say that always happens, but like kids surprise me all the time. TheyÕre like, I never say never, because I mean, yes, there's certain diagnoses that certain things aren't going to happen based on the way their anatomy is. But we have to give kids a chance to show us what they can do and not assume that we always preach DIR/Floortime. If you want to learn more there's lots and lots of courses.

The thing with Trauma Informed Care is like, it's just a constant learning and evaluating what you're doing and that's why these principles are really helpful, because it's like you see someone doing something or you're seeing some philosophy or technique and youÕre like, does this fall under these things? Does this allow a child to have this autonomy and choices and feel safe or does it not? If it doesn't, maybe take a step back and think about why that is and think about if that's something that we should be doing.

TA 1:05:20

For time and traveling from care these philosophies and approaches they were exactly what I needed coming out of grad school. We talked about this a little bit before, but we learned all these things and then we get out there and it's like some things are just not feeling right and trust your gut, trust your intuition. Yeah, it's a strategy or a way of doing something is not feeling good and it's not feeling authentic and you're struggling to make progress. Yeah, just take a look and see how it compares to neurodiversity affirming approaches, strength-based approaches.

EF 1:05:54

Yeah. It's very fun. It feels so much better than what I was doing sometimes in grad school where I was just like, I just feel anxious. I mean, yeah, there's going to be days where like, your kids having a hard day or like you're having a hard day, but for the most part like you shouldn't feel that way going into or out of a session. So, think about that. Yeah.

TA 1:06:15

Find the joy.

EF 1:06:16

Yeah. Well, thank you, Taylor.

TA 1:06:19

Thank you for having me again.

EF 1:06:22

I appreciate you. This is one of my favorite things to talk about. We appreciate you all for listening. We will talk to you soon.

TA 1:06:33

Bye.

EF 1:06:34

Bye [END OF INTERVIEW]

ANNOUNCER 1:06:36

Thank you for joining us for today's course. To complete the course, you must log into your account and complete the quiz and the survey. If you have indicated that you are part of the ASHA registry and entered both your ASHA number and a complete mailing address in your account profile prior to course completion, we will submit earned CEUs to ASHA. Please allow one to two months from the completion date for your CEUs to reflect on your ASHA transcript. Please note that if this information is missing, we cannot submit to ASHA on your behalf. Thanks again for joining us. We hope to see you next time.

[OUTRO]

MD 1:07:16

Feeding Matters guides system-wide changes by uniting caregivers, professionals and community partners under the Pediatric Feeding Disorder Alliance. What is this alliance? The alliance is an open access collaborative community, focused on achieving strategic goals within three focus areas; education, advocacy and research. Who is the Alliance? It's you. The Alliance is open to any person passionate about improving care for children with a pediatric feeding disorder. To date, a 187 professionals, caregivers and partners have joined the alliance. You can join today by visiting the Feeding Matters website at www.feedingmatters.org. Click on PFD Alliance tab and sign up today. Change is possible when we work together.

That's a wrap, folks. Once again, thank you for listening to First Bite: Fed, Fun and Functional. I'm your humble, but yet, sassy host, Michelle Dawson, the All-Things PFDs SLP. This podcast is part of a course offered for continuing education through SpeechTherapyPD.com. Please check out the website if you'd like to learn more about CEU opportunities for this episode, as well as the ones that are archived. As always, remember, feed your mind, feed your soul, be kind and feed those babies.

[END] FBP 272 Transcript ©Ê2024 First Bite 1