In this interview, Chris Russell, who is the Project Coordinator for the New York Deaf-Blind Collaborative, discusses supporting availability for learning and biobehavioral assessments with students who have significant multiple disabilities, including visual impairment and/or deafblindness.
[MUSIC PLAYING] Hello and welcome to Perkins eLearning to Go. Each week, our hope is to provide you with an inside look at special education topics– in particular, visual impairment. Through a series of interviews with leaders in the field and a fresh look at our webcast series, we know you will learn something new when you are on the go. Now it’s time to sit back, relax, and let’s hear what this week’s podcast is all about.
Valerie: Welcome to Perkins eLearning to Go. This is Valerie. Let’s talk about Chris Russell.
Chris is the Project Coordinator for the New York Deaf-Blind Collaborative, and has experience as a classroom teacher and TVI working with children who have visual impairment and additional disabilities– including deafblindness. He is a Perkins-Roman CVI Range Endorsee and is co-instructor with Dr. Christine Roman’s Perkins CVI course.
However, Chris is not here to talk about his work with CVI. Rather, he is here to talk about his extensive work in supporting availability for learning and biobehavioral assessments. Sound interesting? I think so, too. Let’s chat.
Hi Chris, thank you so much for joining me today.
Chris: Thanks. It’s such a pleasure to be here.
Valerie: As I mentioned in the beginning, you have a background in supporting availability for learning and biobehavioral assessment. I’d love to hear more about this, but before we do, could you please let me know what you mean by availability for learning?
Chris: Yes, definitely. This is a very interesting term. I think that this term availability for learning– it sounds fairly simple. There’s really a lot more to it than it would seem.
And I think that’s because this is a term that does kind of get tossed around a little bit. And it’s often in a really kind of general way. It’s a term that’s used to just describe a child’s readiness or their attention. It could be used to talk about whether the student is literally attending to instruction, whether the child is sitting up in their chair, orienting toward a speaker, making eye contact, or using actual language feedback to show I’m listening, I understand, or asking questions about– I need clarification.
And so in that sense, that term availability for learning– it does really apply to everyone. Everyone has levels of availability of when they’re paying attention, and then when they’re actually learning and responding.
The problem is that these conventional ways of determining whether a child is available or ready to learn– the ones I just shared, especially. If you think about eye contact or language feedback or orienting or even sitting up in a chair, those don’t often apply to students– to children who have visual impairments who also have those additional physical– the multi-sensory challenges, and who may struggle to maintain availability, but also who just may struggle to show in a conventional way that they are available or attending.
And so for those kids, It’s much more difficult for the professionals who are working with them to understand and determine if the child is actually available. We have to think outside the box.
And so, in this context, when we use that term “availability for learning”, we’re talking about something that’s much more complicated. We’re talking about ways of understanding the state of behavior or the state of arousal– what’s called the biobehavioral state– that is necessary for the child to actually be able to take in and process information and experiences.
And so it opens up this big, big, big topic around understanding communication– pre-symbolic and unconventional ways of communicating– and understanding the child’s sensory needs and preferences. And then also on a much more physical level and biophysical level. Understanding how to read a child who doesn’t communicate conventionally and may struggle to show that they are responsive or responding.
Valerie: Interesting. So you’ve completed a lot of work in this area. So can you tell me about the background a little bit? How did you get involved in this?
Chris: Sure. Yeah, it’s a great question. I think this is an area that I became interested in and engaged with really because I saw what I felt was a critical need for more work in this area.
And when I talked about availability for learning being a term that’s kind of tossed around and used generally to just describe attending, I saw that this really wasn’t– it wasn’t working for making real plans for progress for a child who has much more significant and complex needs.
And so I found some interesting things when I looked into this work. There were a handful of articles and studies conducted mostly in the 1990s about biobehavioral assessment– which we’ll talk about in a bit.
But there was one that I’ve found that I thought was quite funny, but also pretty poignant and showed a real critical need. So this was this study in 1994. The main author’s last name is Green. And in this study by Green and colleagues, they basically asked teachers to report on their practices with students who struggle to maintain availability for learning for various reasons. If it was behaviors or sensory states or just the student is sleeping all day.
And so the results of this study– they basically asked teachers when do you want to conduct training– or when do you teach? When a student is alert or when a student is not alert?
And not surprisingly, the majority of teachers said that they felt that it was helpful to teach when the student was alert versus not alert. And so it’s funny, because the percentage they give is 98% of teachers felt that it was helpful to teach students who were alert. So I’m not sure what’s wrong with that other 2% of teachers, but it’s good news that we all sort of more or less agree that we should teach when students are alert.
But the alarming second result of this study was that 70% of those teachers reported postponing teaching due to non-alertness. And so that’s a problem.
If you work with students who have multiple disabilities, who do struggle to maintain alertness and who may sleep throughout the day, may have seizure disorders that are not under control, may have all various different reasons or health complications, sensory challenges, central nervous system differences. It’s a problem if we’re basically saying that we’re going to postpone training due to non-alertness rather than to intervene and to understand why this non-alertness is happening and understand how we can promote alertness when the child is not alert.
And so looking at some of that work and then looking at what’s been done about this in the past and some of the different assessments that have been made and studies that have been done on this, I just found very, very poignant.
Chris: And then in terms of the population itself– I was a classroom teacher, working with students with visual impairments and multiple disabilities of various age groups over a period of five years. And before that, I was a paraprofessional working with those students. And then during that time, I went back and got my TVI certification, and now I’m working with the New York State Deaf-Blind Collaborative.
And in each of those roles, I had this opportunity to interact with students who really, truly struggle to maintain alertness and availability. But it’s not enough to just say that in a general way. You need to understand what that means.
There really has been– in terms of this critical need that I spoke about, and why I think that this is such an important area– there’s been– and I think we can only expect to see more– really an increased population of students with multiple disabilities. In the world of deafblindness, it hovers right around 10,000 students from 0– or children and youth, from birth to 21, who are deafblind across the country.
And about 10,000, and that number remains more or less the same. But in looking at the census– the child count data that the National Center on Deaf-Blindness keeps, what we see is a very interesting shift in the population.
And so the statistic that I brought up that I was really just blown away by is that in 2005, 13% of those 10,000 children had four or more additional disabilities– in addition to vision and hearing loss.
Chris: Right? And so that’s in 2005. Basically, 13% had four or more additional disabilities. In 2016, 43% had four or more additional disabilities.
Chris: And so we’ve seen a dramatic shift in the population of students who are deafblind, but I think that it’s probably also true of the students with visual impairments in general. We in the field of blindness and visual impairment– we know this, because we’ve seen the shift in population over the years.
But to have those numbers in front of you, to say that we’re really seeing a very dramatic shift of students who have four or more additional disabilities on top of vision and hearing loss, that to me suggests that we only need to focus on this area more. Because we’re talking about kids who have complex health care needs, who have physical, multi-sensory challenges. And I think that we will see more students who do struggle– if we’re not already seeing them– who struggle to maintain availability throughout the day.
Valerie: Do you think that the students having more multiple disabilities is due to better diagnostic testing? Diagnoses becoming more readily available?
Chris: That’s a great question. I think it’s the same answer that we talk about a lot in the field of Cortical Visual Impairment– of CVI.
I think it’s two things. It’s the improved diagnostic testing, but probably more than anything, it’s the fact that we are able to– that children with complex multiple challenges– especially those who are very early preterm birth– that they are surviving at a much higher rate than they were 20, or maybe even 10 years ago. And though the risk factors are much higher.
So you know at the same time as we see these medical advancements that, for example, reduce the incidence of retinopathy of prematurity– that’s gone way, way, way down– at the same time as ROP has gone down, CVI has gone up. And it’s because we are able to treat certain conditions that we weren’t able to treat before, but we’re also able to allow– well, basically to keep children alive who may not have survived 10 or even 20 years ago.
Valerie: Wow. So how does availability for learning relate to specific needs of this population?
Chris: Great. Yeah.
So, in terms of just thinking about– for these kids who have multiple and sort of complex challenges, they may not be able to– very often are not able to respond in conventional ways, or some don’t have symbolism or language. But they also may struggle on a physical level and on a biophysical level to show that they are alert or attending, or to maintain actual alertness or attending.
So for these kids we really have to think outside the box and find ways to understand. How can you tell if the child is alert if they don’t show you that in a conventional way? How can you tell that the child is attending if they don’t make eye contact, if they don’t set up in their chair, if they don’t respond in conventional ways?
And then the really challenging ones are how can you tell if that child is processing information? How can you tell if that child’s retaining information?
Chris: And so we almost have to take a step back and just think about what learning is. Learning is physical change in the brain. And learning occurs because those neurons synapses are happening. They’re being used, and they’re being used again, with repeated experiences. And they’re being strengthened and those pathways are being formed and strengthened inside the brain.
So on the one hand it applies in this interesting way to kids because we have to think about learning in a different way. We have to think about it on a level of what– in an article for the Texas School for the Blind and Visually Impaired, there is an article by Robbie Blaha, I think from the early 2000s, where she talks about this and looks at just different ways of thinking about learning that really do apply to everyone, even the children with the most kind of complex and profound needs.
And so we can think about learning just in terms of habituation– getting used to something. So something that surprised you in the past or that startled you in the past, even just on a reflexive level. If it stops startling you, then you’re actually learning. You’re making physical change in the brain.
So if there’s a certain loud sound that comes on in the classroom and it startles the child. Well, if that sound is happening every three minutes, how long does it take for the child to become habituated to that and to learn that that’s just something that’s part of the environment?
Chris: So thinking about learning on these early levels is, I think, the beginning of it. And then what it’s really about is– it’s about understanding those what’s called biobehavioral states. And so really understanding– and so just to break that term apart a little bit.
That term “biobehavioral states”– which is really the deeper layer of availability for learning for kids with multiple disabilities. The states part, it just refers to the condition that the child is in at any particular moment.
And so that’s what I like to refer to as– it’s this scale. Basically from passed out– totally passed out, to totally freaking out. Deeply asleep or uncontrollably agitated on the other side of that scale.
And there are different ways to look at that. There are different ways to assess that. But what we’re really talking about is core understanding. That there are these different states that everyone goes through, from deep sleep all the way to uncontrollably agitated.
And we need those states for various reasons. Obviously, we need deep sleep. We also need uncontrollably agitated, because action and, actually, stress creates neurological change and progress, if it’s in a controlled way.
So we need those states. And we shift between those states throughout the day. We all do.
But it’s really only right in the middle of that scale, in these states that are called either– there’s quiet awake, which is sort of just nicely attending, listening, not too energized, but kind of right there with it. Hopefully, if you’re listening to this podcast, you’re feeling kind of like quiet awake.
And then there’s active awake, which is more like sitting on the edge of your chair engaged and excited in what’s going on. And I’m very happy if you’re listening to this podcast and feeling active awake. We just don’t want them to get to the agitated state. Not to the uncontrollable agitated, and hopefully not deep sleep either. But the idea is that you can only learn– neurologically, you can only learn in those states– in the quiet awake and active awake.
We’re not learning when we’re in deep sleep. We can all accept that. But also, we’re not learning when we’re agitated. And so if you think about a moment when you were agitated– you were stressed, you were preoccupied, you were upset– for any various reason– emotionally or physically or on any level– you’re not able to take in information at that time. And so we shouldn’t expect that of our students, either.
Chris: But at the same time, what that study showed is that if we need to be really cautious about postponing instruction due to deep sleep, but also due to uncontrollably agitated. So we have to find a way to understand. How do we get kids into those two states where they can learn– the quiet awake state and the active awake state– how do we get them into those states and how do we keep them in those states for as long as possible?
It’s a challenge, though, because we also do have to understand that kids with multiple disabilities very often need to spend more time than people who are neurotypical. They need to spend more time in some of those other states. They may need more time in the deep sleep state, especially if they have severe seizure disorders– if they struggle to maintain equilibrium for different reasons.
So it’s not that we want to shake a kid out of deep sleep, but it’s more like we want to figure out when they’re just a little bit drowsy, how do we get them into a quiet awake state? Or when they’re just a little bit fussy, how do we bring them down a little bit to an active awake state?
Valerie: It’s interesting you say that. We actually just did a podcast with Nathalie DeWitt, and she specializes in sensory motor. And the children that she teaches are in that early learning sensory motor state. And she has a series of videos with one particular student going through, and how she is able to figure out how to reach this little girl to shake a bottle of beans. And you see her being able to connect to her.
It’s really fascinating, actually– at the end of the last video– how she has really taken to that bottle of beans and is going to be a future rock star. But it’s very interesting and I’m constantly amazed– with TVIs especially– on how creative they are and able to figure out a way to get into that student.
Chris: That’s just awesome. And I think that really brings up– I think it goes back to what Jan van Dijk said. Everybody listening, if you’re not familiar with Jan van Dijk’s work, I think it’s really– his work really formed kind of a critical way of thinking about this that most of you– hopefully, all– are actually practicing, whether you know it or not.
But it’s exactly what you just described, Val. It’s about understanding that we shouldn’t expect kids to come into our world. We have to find ways to get into their world.
So we have to find ways, first, to develop that rapport and that trust that is so critical to a child welcoming us into their world. But we also have to be very thoughtful and do a lot of sometimes actual assessment– as much as a lot of us hate doing that.
We have to do some of that background work to figure out what are the things that motivate this child? How can we connect with this child? Sometimes, it’s really just about finding out what their preferences are.
Valerie: That’s kind of a good segue my next question, which is about the biobehavioral assessment. Well, I guess first of all, what is the biobehavioral assessment and how is it used to determine how a child is available for learning?
Chris: Yes. So there isn’t really a set biobehavioral assessment. There are different ways of looking at it. And there are some formal assessments that were developed over 20– 25, at least– years ago, maybe longer. And you can use some actual formal assessments to get some of this information.
But I think that what we’ve learned– and what I’ve learned anyway– is that we need to modify and we need to individualize for our students– which I think is always true.
But those states that I talked about– the deep sleep to the uncontrollably agitated– those come from an assessment called the Carolina Record of Individual Behavior. And that’s a formal assessment looking at biobehavioral states.
And what it’s asking you to do is to look at when is a child in these various states. And it goes deep sleep– that’s passed out– intermediate sleep is definitely still asleep, but maybe not REM dreaming, and then active sleep. As we get more alert, active sleep is when you hear the alarm go off and you reach over and you’re still asleep and you hit the alarm to turn it off.
Then there’s drowsy. Everybody knows that feeling of drowsy and kind of head nodding down. Quiet awake and active awake are those real important ones. And then as we get more agitated, there’s fussy awake, and then mildly agitated, and then uncontrollably agitated– freaking out.
And so the first part of that– if you use some of these formal assessments– you’re really just looking at when is a child in those states. And I think that that can be a little too clinical, sometimes. And it is sort of almost like a medical model, in a way, of looking at alertness.
But if we take that and we apply it really on a more holistic level, what we’re really doing and what biobehavioral assessment really is– it’s looking at those states. So let’s find out what those states are and when that child is in each state and for how long.
Chris: But then probably more importantly, it’s looking at all of the internal factors and the external factors that are having an influence on that child’s state or on their availability. And so those internal and external factors are very– some of them– the external ones– could be environmental. Those could be things like the lighting, the background noise, the number of people in the room, the kinds of input that the child’s getting. And if you think about kids with CVI in particular, multi-sensory complexity is a huge, huge external factor that impacts the child’s availability, and it’s not just on a visual level.
So there’s those external factors. But then there’s also the internal factors– the child’s background, their specific medical conditions, the medication that they might be on. Then also things like the amount of sleep that they’ve had the night before– which doesn’t that impact all of us? There are the food intake, the seizure activity, and all of these internal things that impact the child’s availability.
I have a couple of stories from my experience that really brought some of those things home to me. And the first one was a child that we were working on some of this biobehavioral assessment on trying to figure out– I usually bring this up or I suggest that we do some assessment when I see a student who really is struggling to maintain that availability. And it’s usually the number one issue that the team has is how do we get this child– how do we support this child to be in a state where they can attend, where they can connect, where they can have interactions, and where they can explore, and then ultimately, learn.
Because one student where we were looking at– and it was because the speech pathologist was concerned and said, half of the school year already gone by and every single time that the child is in speech– the student comes to speech, they are exhausted and they can’t keep their head up and they’re falling asleep throughout the whole speech session, every time. What is going on what do we do about this?
And for this student, it was kind of wild. All we really needed to do was look at this child’s schedule to understand what was going on. The child comes to school after a long bus ride– an hour long bus ride. Who knows what state the child is in on the bus. Gets to school, is a little bit drowsy, a little bit tired. Whether it’s because the child got enough sleep the night before or whether it’s because the child took seizure meds in the morning– not clear.
But gets to school a little bit drowsy, has a little morning meeting time, and then goes straight to OT, and then straight to PT, and then has lunch, and then goes to speech.
Valerie: Oh, wow.
Chris: So you could imagine after OT, PT, lunch– doesn’t everybody want a nap after lunch?
This child was exhausted by the time he got to speech. And so really, for this child, one of the major external factors was just the child’s schedule– the order of the events in the day. It was having such an impact.
Valerie: Or at least splitting up some of the physical parts of his day.
And you also don’t know if the child is stressed. I know, for me, I have a long commute. And if it’s a particularly busy or crazy commute, I can get tired just from having to pay attention and just the stress of the whole ride. So if a child doesn’t particularly like the car and they have a long commute, that certainly can wear on the child, too, I would think.
Exactly. And you know,0 that’s a good example. That’s actually one of the go to examples that I like to use to talk about what we’re really trying to do with this whole process and this whole thing, is when you think about drowsiness– that we all experience that drowsiness of your head nodding down. You’re trying to stay awake.
And if you drive– then if you drive a car, then you’ve probably had that experience where you start to get drowsy when you’re driving. And when you have that experience, you make choices about the way that you’re going to impact your biobehavioral state– your drowsiness. And so the choices that you make– if you pick them apart, they actually all fit different sensory input. They fit different channels of sensory input.
So in trainings on this, I’ve asked people what do you do when you feel drowsy in the car? Right? So most people say, oh, I roll the window down. So that’s giving yourself cool air, that’s tactual input– it’s tactile, tactual input.
Or I turn the radio up and I put loud music on. That is auditory stimulating input. Or somebody said that they hit themself in the face. I mean, whatever works for you, but that is also tactual input– tactual stimulating input.
Some people say they chew gum. That would be vestibular input. It’s also tactual, too. It might be olfactory, as well.
Some people say, oh, I’d pull over and get a cup of coffee. Well, that’s actually changing your biophysical status by giving yourself caffeine. So giving yourself an actual biophysical input to wake yourself up.
What people don’t usually say that’s probably the first thing that you do– and you probably do it because it’s subconscious– is you set up in your seat. So you change your actual position– probably before anything else, you change your position.
So the idea about this sort of analogy is we all do things– and they all fit sensory channels– to impact our biobehavioral states when we need to. The kids that we’re talking about can’t do that. If they’re feeling drowsy, they can’t turn the fan on to give themselves a light, cool, stimulating tactual input. They can’t give themself a cup of coffee or change their biophysical status. If they have physical challenges, they may not be able to sit up in their chair to adjust their positioning to get to a more stimulating, alert position.
So that’s what we’re trying to do with this biobehavioral assessment. We’re trying to figure out what is calming and alerting to kids and how can we look at the big, big, big picture of what’s going on in this child’s day, as well as what are the internal and the external influences, so that we can make a plan to increase their availability.
Valerie: Could you explain how you would go about assessing a child?
Chris: Yes, definitely. So there are these sort of formal and even some standardized assessments– like I mentioned, the Carolina Record of Individual Behavior. There is also one called the Analyzing Behavior State and Learning Environments Profile. We love our acronyms, so that one is ABLE– A-B-L-E.
And there was some really great work done by Millie Smith in the ’90s, where she kind of talked about how those two assessments are a little bit rigid, and they’re just very formal. And so they don’t necessarily always produce the best results, I would say, for some of our kids.
And so she created a more informal– what she called a teacher-made assessment tool, and she encouraged people to modify that. And I basically took that and did some extra modifications and added in some other things that I felt like were important– things like considering the positioning that a child is in, considering the contact that the child’s in with other people– and I kind of created another tool to use.
And so I would be happy to share that tool. Actually, I believe that tool is also already on the Perkins eLearning site on webinar that I had done on availability for learning in the past.
But basically, in order to assess a student– in order to assess biobehavioral states– it’s a collaborative type of assessment, I think like any assessment is. It should involve the family, like any assessment should. But what’s really critical there is that the very first step– no matter what form or assessment protocol you use, the first step is getting background information.
So you want to get background information on the child’s history, the impact of specific medication, the impact of specific conditions, and whatnot. And then you want to get actual background information from, say, the last 24 hours before observation. So that’s food and liquid intake, medication, seizure activity, and– really importantly– sleep information. And so you want to ask the family to report on how much sleep did the child get the night before, how long, did they wake up in the middle of the night, these kind of things.
And then to some of that what I added was also elimination activity, because I think that definitely often impacts kids. Also, what are the side effects of medication that we know about?
And then some comments about the seizure activity– was there an aura? Was there something that was visible before the seizure happened? What was the child’s state like after the seizure? Did they sleep after? Et cetera.
And once you’ve got that background information, then you want to do an observation. And during that observation, you want to collect data. So the reason that I made this form– this new version of the form– is that I felt like we needed a more simple and straightforward way to get that data.
So what we’re looking at is basically you pick a time duration– like an interval– that you’re going to observe the child. It could be a full day. If it’s a full day that you’re looking at, then you maybe want to– every half hour, you’re taking data on the half hour. If you really just want to look at a certain activity, then you might do minute intervals during that half hour activity.
And so whatever interval you pick, you’re recording what is the behavior state that that child’s in– from what I say about passed out to freaking out– what’s the behavior state that the child’s in? And then during that state, what position is the child in?
What are the environmental or external context? What’s the lighting like? What’s the temperature of the room like? What is the sound in the background information like?
And then also, what’s the social context? Is there a person in physical contact? Is there a person just in proximity to the child? Is there a person actually using hand-under-hand or– hopefully not– using hand-over-hand?
And then we might also want to know who is that person? Is it a teacher? Is it a paraprofessional? Is it a therapist? Who is it?
So we’re collecting all that data because what we’re trying to do is we’re trying to find is there a trend? When a child is in a certain state– when the child is awake– active awake– do they tend to be active awake when they’re in one position, when they’re seated with supports? Do they tend to be drowsy when the lighting is dim or when the temperature in the room is a little warmer– like we all might experience. Do they tend to sleep a lot after they’ve been in an intense, physical contact with another person? That would make sense, too.
So after we take all this data, we’re trying to evaluate– we’re looking at the data and we’re trying to figure out what is happening when the child is in these various states? And then really importantly, what’s happening when they’re in those awake and alert states? Because that’s going to inform the kind of intervention that we make to figure out well, what keeps the child in this awake state? Or when the child’s drowsy, what can we do?
So that’s sort of the basics of this type of assessment. And again, I think that availability for learning does apply to everyone, but there are some students and some kids who, really, this is the most important thing in order to– for anything else that we’re trying to do with the child, we have to tackle this first.
And if you work with a child for whom that’s relevant, you probably are already thinking that. You’re probably already thinking, wow. We have to figure out how do we keep this child alert, or how do we get this child alert?
So this is a way of starting to tackle that. And it’s still somewhat informal, but I think what’s useful about it is that it does look at all these different inputs– like position and environment and interaction and internal and the external impacts.
Valerie: It really does look at the child as a whole, like an individual, rather than blanket the– not the therapies– the techniques across an entire class. I like the fact that you’re taking the child as their own individual and catering to their own individual needs.
Chris: Yeah. Absolutely. And you know that also makes me think, too. It’s not just about this looking at the states. It really is about more, like you said, looking at the child as an individual. And so it might be equally important, or maybe even more important, to do some other, sometimes very simple, assessment, like identifying sensory preferences, a likes and dislikes chart.
It’s sort of like– in the TVI field, it’s basically like a learning media assessment, where we’re trying to figure out what are the sensory channels that really are accessible to the child, but on a level of what calms and alerts them? What stresses them out? What overloads the child? What are the child’s preferences on a sensory level?
And so we might have to do some more assessment to understand that, too– to really think who is this individual child and what are the real specific ways that we can support the child to be engaged and to– sometimes literally– to kind of come out of their shell and be ready to explore and to interact.
Valerie: It’s a little upfront work for a huge payout in the end.
Chris: Yeah, I really think so. I think that if you’re listening to this and you feel that this is relevant to students that you work with, sometimes it’s really because you’re at that point where you just don’t know how to– you know that an intervention is needed, but you don’t know how to address that. It seems too big.
Chris: It reminds me of just another little story, which really was another very big eye opener for me– in a child that, again I was supporting a CVI assessment for. And this child had no voluntary motor control. And so she– she had no voluntary body motor control. She also had no voluntary motor movement in her eyes, so she didn’t have the ocular motor control to move her eyes back and forth.
So we were trying to figure out, what does this child see? And again, sort of pulling every CVI trick out of my CVI bag of tricks, and trying to determine what was this child interested in looking at and what was the child processing?
And so kind of assuming– based on what I had observed– that the child is probably in Phase 1 of CVI. So we’re looking at dimming the lighting and creating a very controlled environment and showing her things that we think kids with CVI in Phase 1 are maybe interested in– like red glow sticks and shiny things that have movement and bright color and light. And we’re trying that in her close visual fields and her right side and her left side, giving her plenty of time to process.
But because the child didn’t have any of the conventional communication expressively, and also didn’t have the motor control to be able to even move her eyes to shift towards something, I really couldn’t figure out what is she processing and what’s she responding to? And I never say that I was going to give up, but I was almost at that point where I really just wasn’t sure.
And the child has a one-to-one health aide or a nurse– one-to-one nurse– and she’s on a heart rate monitor. And I was at the point of I don’t know what to do. I’m not sure what’s next, what we should try. And that’s when the nurse said, “Oh, but didn’t you notice that she really liked looking at that bright green glow stick that you showed her?”
And I thought, wow, that’s interesting. Why did you think that? How did you know that she was interested in that bright green glow stick?
And the nurse said, “Well, because I’m sitting here watching her heart rate monitor, and the heart rate monitor goes up consistently when you show her that, but not when you show her other things.”
Valerie: Oh, that’s interesting.
Chris: And that was absolutely mind-blowing to me, because sure enough, we tried it out and we found that the bright green glow stick was absolutely consistently raising her heart rate.
Chris: And whereas a red glow stick wasn’t, or a blue one or a red pompom or a red ball or any of those other kind of things we were trying. And so that experience really shifted my thinking on assessment, but also just on understanding the way that we might get that information about kids to be able to support them with their goals and with their next steps and with things that are interesting and functional.
Because if you look at the child’s IEP goals, there’s nothing there that shows that response on an IEP. There’s nothing that shows that her heart rate is going to tell us something about her availability, or about her understanding, even, or her shifting attention.
It’s all of these conventional responses that are not fair to her because they’re not part of how she actually responds. So she showed us, expressively, that she was consistently raising her heart rate and that that was actually something that we could measure.
And so my point is why don’t we start there? Why don’t we start with something that we can measure and observe?
And it’s kind of abstract to say that we’re going to build an IEP around an increased heart rate, but it’s also we know that the child is either interested in or may maybe surprised by or– at the very least– has a response to and a processing of that green light. And the reason that we know that is because of the heart rate.
Valerie: And if that’s all you have, I mean I think it’s a good start. If all you know is this heart rate’s going up, it’s a great way to– I think, anyway– a great way to form how you’re going to help her.
Chris: Yes, exactly. And so intervention for her may mean showing her that thing that we know– like on a CVI Phase 1 intervention– show her that thing that we know that she can see, giving her more experience with that.
But then also there’s that communication piece that we don’t always talk about when we talk about CVI, is well, could we also now add a touch cube to show her, hey. I’m here. I’m going to show you something.
I’m going to show you something on your right side. So I’m going to give you a light touch on your shoulder on the right side. And now I’m going to show you this.
And then I’m also going to use language, because we are still assuming– we’re still presuming her competence. We’re still presuming that she has the receptive abilities. But we know that expressively, her strongest and most consistent expressive communication is her heart rate.
But receptivity, we’re still talking to her. Then we’re adding some scaffolding in communication with a light touch cue. We’re giving her more experience, showing her things that we know that she has the ability to process.
And then what we know about kids with CVI– and I think we just know this about kids, in general– is that more experience, more routine, more practice leads to more skills, and to learning. And so that’s right back to that availability for learning that applies to everyone. It’s that strengthening of synapses in the brain based on experiences that the child is able to connect to on their terms, on their level.
Valerie: It’s the building blocks of learning.
Chris: Yeah, exactly.
Valerie: And her preferred color.
Chris: Yeah, definitely. So it shows preferences. I think we can’t overemphasize the importance of child-centered intervention, and we just can’t have child-centered intervention unless we have child-centered assessment.
Chris: Mhm. So what you’re looking for– I mean, I think that intervention practices, they can be so, so individual from student to student. And in my experience, sometimes it’s something simple– like just changing the child’s schedule.
It’s really once you’ve identified what you think is causing them to be in these unavailable states for long periods of day, that’s where you start to create these sort of more structural interventions. So it may be about the scheduling. It may be about– positioning is a really big one.
I was doing a CVI– supporting the CVI assessment for a child in a hospital setting– a young child in a hospital setting. And I just couldn’t figure out how to get visual input from the student. I knew that this child is seeing something and I was trying every trick in my CVI bag of tricks. I couldn’t get anything.
And finally, the nurse– who was sort of observing me from her own side eye said, oh, why don’t you try lying her on her side? I thought the child’s perfectly well supported sitting in this Rifton chair with nice physical support, so that looked good to me.
But it actually turned out that this child had a very strong preference for side-lying and felt way more comfortable when she was lying on her side. It may be from experience, maybe from a young child who’s spent a lot of time side-lying in a hospital.
And sure enough, as soon as we changed her position to side-lying, her eyes widened and she started looking at things that she wasn’t looking at.
Valerie: Wow, interesting.
Chris: So that is an intervention, just positioning. Just thinking about what’s the maximum optimal position for a child to be in? And that might be different, depending on the time of day or the specific activity.
Then there’s those external factors. Some of them are much easier to create interventions for– just changing the lighting. I mean, again, talking about kids with CVI and multiple challenges, facing them away from bright windows or facing them away from complex, busy background, sometimes that makes a big difference.
The internal factors, sometimes, can be harder to create interventions for, but sometimes that’s necessary. So I’m thinking of a particular child who I was working with who was struggling to maintain that availability, was really tired throughout the day. And when we looked at the background information about the child’s medication intake, their seizures over the last 24 hours before the assessment, and the food intake, and toileting and elimination, the biggest thing that we found was that when the child takes the seizure meds was probably what was having the biggest impact.
So yes, the child does have to take the seizure meds. Absolutely. But does the child have to take the seizure meds at 7 o’clock right before they get on the school bus to go to school? Because those seizure meds have the side effect of making the child very tired for the next three to four hours. So there goes the school day.
Valerie: Right, right.
Chris: Sometimes we can’t change that. But if we do determine through assessment that it is the biggest issue, then we have to address it. We have to– the whole process should involve the family.
But at that point, we really want to talk to the family and then maybe even get the doctor involved– get a neurologist involved, to say these seizure meds, they’re really impacting the child’s availability. Is there anything we can do about that timing? Can the child maybe take the seizure meds a little later in the day? Could they be administered by the school nurse?
So the intervention– so though that’s just sort of even the surface layer of the interventions, but I think that on a much bigger level, the interventions are about communication supports and supporting the child with all of these practices about communication and interaction and touch and hand use and being able to support the child with all of these– I used to call them strategies, but then Barbara Miles– if you’re familiar with her work, you’ll know exactly how important it is. She really is foundational in talking about hand use and using hand-under-hand instead of hand-over-hand.
So I used to use that word the strategies that we use to support child. But she told me that strategy is a military term, and we really– in an educational field, we should use technique, because it’s more of an artistic and philosophical approach. So I think–
Valerie: I like that idea.
So we’re talking about the techniques that we use. And so those techniques definitely should include hand-under-hand, instead of hand-over-hand which just causes stress and discomfort.
But then there are also other strategies– ah, I said it again. So other techniques, like using touch cues. A touch cue is a light touch in a non-intrusive way on a specific place on the child’s body to give them anticipation about something that is going to happen next. So…
Valerie: So for– sorry to interrupt, but I attended the commencement here at Perkins a few weeks ago. And I did notice the TVI’s or the TAs would lightly touch the back of the students shoulders when they wanted them to move back to their seat during commencement.
Chris: That’s great.
Valerie: Is that similar to what you’re referring to?
Chris: Absolutely. Yeah. If you think about kids who need that extra concrete input– or maybe they even just need more time to process, too– I think that kids with multiple disabilities, in general– definitely kids with visual impairments and multiple disabilities– very often have these long histories of being kind of pulled around.
Chris: And I don’t think it’s a– it’s not intended to be in a negative way, but it does have that impact. And so we need to use these techniques– like a light, meaningful touch– to be able to show something specific.
It could be like that light touch on the back just to let the child know that you’re there– or on the shoulder. And then on more specific levels, you can almost develop an inventory of touch cues of what those touch cues mean.
So for a child who wears orthotics– who wears, say, like ankle or orthotics– if you work with kids who have ankle orthotics, you’ve probably seen someone just come up to the child and say, hey, I’m going to take off your orthotics, or I’m going to put on your orthotics. And then that same moment, you see the person take the child’s leg and pull it aside and take their shoe off and pull the orthotic off or put the orthotic on. And there isn’t a concrete connection that’s been made and if you watch the child’s face or responses, you’ll probably see that they’re stressed.
So instead, just a light touch on the shin. And then you’d still say I’m going to put on or I’m going to take off your orthotic, or you sign or you communicate it on a language level. But you’re adding that light touch– which is very concrete and it’s always on that same place right on the shin– means I’m going to take off or put on your orthotic.
Valerie: So at least it’s in the area, too, of what you’re going to do. So the child knows OK, something’s going to be going on with my leg.
Chris: Exactly, and you could apply that to anything. How many times do you see somebody– for lack of a better term– physically manipulating kids who have visual impairments without giving them information that is concrete and understandable to them.
The placement of touch is really important. You could do the same thing with putting on or taking off hearing aids or cochlear implant or glasses. Just a light touch, maybe to the side of the head. Right?
Or instead of I’m just going to– for mealtime, I’m going to wipe your face with one of those wet wipes. A light touch on the cheek before I wipe your mouth, as opposed to just out of nowhere comes this wet wipe in your face.
Valerie: Right. And if the child can’t see, I can imagine how jarring that might be– for anybody, to not see. You can’t see it coming.
Chris: Exactly. So I just wanted to say something a little bit about understanding stress and understanding what’s often described as behaviors or maladaptive behaviors, whether they are aggressive outwardly or self-aggressive, as well as what’s often called self stimulation.
And so there’s a really amazing article– that I would encourage everyone to go and check out– by David Brown, called “Stress Good Cop Versus Bad Cop.” It’s a very reader-friendly article. A nice, short, and very engaging little article, where he talks about how stress, on a neurological level, is actually a positive and a protective response, and a response that’s actually very critical to our neurological growth and to our learning. But it’s only helpful if it’s limited and if it’s able to be controlled.
So there are chemicals– or hormones– that are released when you experience stress. There are many, but the two major ones that we can measure are norepinephrine and cortisol.
And norepinephrine actually promotes brain development. So when we’re stressed out, when we are experiencing minor levels of stress that are manageable, our brain produces these hormones that actually help the brain grow and strengthen pathways. But those hormones can cause damage if they’re active for too long.
So when we think about it, what we’re really talking about is kids who have those sort of what often get described as behaviors that require some sort of intervention or behavior plan. What we’re talking about is behaviors that the child has developed in order to cope with stress. All right? So if a child is stressed on an internal level or as a response to something external.
There was a really fascinating study in 2013 by Cathy Nelson and colleagues that looked at measuring those cortisol levels– measuring those stress hormones in students with multiple disabilities before and after sort of quote, unquote, “behavior interventions.” And the hypothesis was that kids with aggressive behaviors would have higher cortisol levels. So kids who had those outwardly aggressive or self-aggressive behaviors would have higher levels of stress hormone.
And what they actually found was exactly the opposite. That the behaviors served to reduce the cortisol levels. So what that means is that maladaptive– sort of quote, unquote, “maladaptive behaviors” may actually serve as a coping mechanism against stress, and may bring the child’s state back down when they’re stressed.
So you can sort of think about how that might apply to your own experiences when you’re really stressed out, even when you’re upset or even angry, your tendency is to react and act outwardly– whatever that might be. And that outward action or that release reduces your stress levels.
And so kids who have those behaviors– and the reason that this is relevant to kids with– to biobehavioral assessment and to availability for learning– is that kids who have those behaviors, don’t just dismiss them as being maladaptive or negative. They may actually serve a very specific purpose. And they may serve the purpose of calming and bringing the child down, even though they look like the opposite.
So when you’re thinking about how do you get a child into that available state when they’re at that high, high, high, heightened, agitated, freaking out state, it actually serves a purpose. It serves the purpose of reducing stress levels.
And self-stimulation does a similar kind of thing, right? It’s about finding equilibrium.
So what we’re trying to do and– in terms of if kids actually need interventions for those behaviors, whether they’re aggressive behaviors that are harmful to self or to others that clearly need intervention, or whether they’re self-stim behaviors that are distracting the child from being able to attend or to learn– we can’t just expect that those things have to be extinguished or cut off or stopped. They probably, more often than not, have to be replaced with something else that allows them to better cope with that stress to effectively bring that stress level down to a level that’s manageable.
Valerie: So instead of– their release might be to hit. So it could be altering that behavior. Right?
Chris: Exactly, yeah. And I think probably the biggest thing is just to recognize that that outward behavior– it’s not just a negative behavior. It’s actually a purposeful behavior that serves, usually, a very effective purpose of reducing that child’s stress level.
And so we don’t want to say it’s a positive thing that kids have behaviors It’s not that. But it’s much more positive, and it shows that the child can do something to alter their own state, as opposed to a child who has, what we call, learned helplessness, where the child has kind of shut down because they’ve learned that my behaviors or my responses don’t have an impact and I can’t use strategies or I can’t use behaviors to impact others or to change my own state, and so I’m just going to stop trying.
That’s what we want to avoid at the highest level. That’s the worst thing for a child is that learned helplessness, which is really the opposite of self-determination. It’s the feeling of my behaviors don’t have an impact, And so I’m going to stop trying.
Valerie: So it’s like giving up, basically.
Chris: Yeah, giving up. And it’s very damaging, because it can also lead to a neurological shut down, too.
Valerie: Thank you, Chris, so much for doing this podcast with me. This was really, really interesting. And you have done some exceptional work in this area.
Chris: Thank you so much, Valerie. No, I really appreciate your inviting me to participate in the podcast, and I really hope this has been useful to all the folks that are listening.
Valerie: Especially when school starts again, all these teachers will have a good kit in their pocket to help out their students.
Chris: Absolutely. Hopefully, throughout the course of this conversation, I did– I tried to mention several different resources and tools. There are just countless tools that we could pull in. I think that really the most important thing is making sure that you’re individualizing– as Valerie talked about– individualizing for your student or your students, and figuring out what are those extra pieces that you have to bring in to really make sure that you are taking a totally child-centered approach.
Aired Date: September 10, 2019
Listen to the recording.
Want to learn more? Check out these related resources.
Assessment of Biobehavioral States: Supporting Availability for Learning for Students with Multiple Disabilities Including Deaf-Blindness & Profound Intellectual & Multiple Disabilities
Biobehavioral States and Availability for Learning