Supporting Independence for Students with C…

Closing The Gap Solutions e-Magazine, August / Sept 2024 Volume 43 - Number 3

mobility, mounting, seating & positioning

Supporting Independence for Students with Complex Bodies in Access to AT/AAC in Activity within the Classroom by Augmenting Seating and Mobility

INTRODUCTION/PROLOGUE: As an Occupational Therapist who has been privileged to serve students with complex bodies for over 40 years, and who has been involved with assistive technology for over 35 years, I hope to share with the readers, a more complete look at how students use AT, especially AAC devices. Since the early years, I am, as an OT, looking for how I can assess and treat, teach and implement strategies and equipment which supports increased functional, individual independence in every day living. As a pediatric therapist, I also remain vigilant with the continued study of human development, especially child development. As a specialist in my field of pediatric occupational therapy I have also spent many hours reading, reflecting, observing, and learning more and more about the neurophysiology of how children and humans learn, how our brains and bodies work and interact together and then store knowledge and use experience to create neuronal pathways which support skill development. In the field of AT, as it began and grew, the computer is the technology where it all began, but in AAC, (augmentative and alternative communication) there were many methods utilized before technology was available. However, these initial early technologies were meant to support accessibility to tasks for adult individuals with disability. The adults who were most able to use AT were adults who had acquired injuries or degenerative

diseases. Adults’ bodies are fully developed, and adults have a range of life experiences, and most adults are readers, mobile, and independent in all of life’s daily activities who now need a different way to manage. Even AAC devices began for this population. As a nation, as the right to education embraced all students, technology also was looked to, and embraced to assist children, in educational settings. But children are not a single group, they are developing into adults, and very young children are hugely different than teens, and the differences are great, as is life experience, and language and motor development. We, as teachers and therapists, must recognize that introducing an AAC device or access to a computer, or a powered chair cannot be introduced with the same strategies, and paradigms of use that enable adults. Children must gain a lot of life experience, and those experiences have a direct effect on their ability to manage all parts of their lives, including technology. It must be remembered that when looking at an AAC device, whether a dedicated speech generating device, or a specific app on an Ipad or tablet, communication, as the goal of this use, is not simply choosing the right device nor the right access method. Children are growing, and developing, and need lots of experiences to support their use of technology. They need to experience true activity, in play, and in learning

KAREN M. KANGAS , OTR/L, An occupational therapist actively practicing for 50 years, an AT specialist over 35 years, an adjunct faculty member, Misericordia University for Seating in Pediatric Practice, in private practice specializing in individuals with complex bodies throughout the state of PA, for seating, mobility and access to AT (including AAC devices, computer access, powered mobility and environmental control), and a clinical educator, teaching workshops throughout the USA. Has taught in New Zealand, Sweden, the UK, Scotland, Ireland, Israel and Canada. She is currently involved in a multi-year pilot state-wide project supporting students with complex bodies supporting the use of AT for inclusion.

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first, with their bodies and brains, and they need to literally “see” the use of AT, and AAC around them, by others within the environment. A communication device is not giving a child a “voice.” It is giving them a word processor. Spoken language does not “live” in the same spots of the brain as written language does. But written language and reading do reside next to each other. Neurophysiologists are still studying the mystery of the relationship of spoken language to orthography. It is still unclear as to how they are related and how they interact. Using an AAC device is “writing,” not “speaking.” To use an AAC device, the individual must first have a thought, hold that thought in their mind, then choose arbitrary symbols located in a specific but arbitrary arrangement, then sequence them, and then produce them. This paradigm is how we write, not how we talk. We don’t write before we talk, in fact, children come to school and use their experience with spoken language to function, and then learn to write and read. Using an AAC device, no matter how proficient anyone would be, will never be as automatic, nor as quick, nor as easy as speaking. Try using your phone to text all day long to everyone and every time you need to talk. You can still use both your hands, and you already are mature with language, a reader, and experienced with your technology, and yet, your conversations will not be as expedient, nor as direct. In this article, I’m hoping to bring the environment and the equipment that is not the technology, more into focus on its impact on the use and skill development of technology. With children, a more holistic approach must be implemented, and that means a real knowledge of growth and development, childhood postural mechanisms, language and motor development’s relationships, and environmental barriers and accessibility must be considered. This is a very short space, to share all that my students and their families and my studies have taught me, but I hope that as you read this and think about it, you will go back to your classrooms and students with“new eyes” and an open heart and mind, to join the journey of supporting independent communication and mobility. ACCESS TO AT/AAC AND ACTIVITY The Definition/s of “ACCESS” 1. How an individual is able to manage an activity of interest with intention, independently. 2. How to manage a particular machine at a particular time for a specific activity which will produce an output (vocal or printed) 3. ASHA’s (American Speech and Hearing Association) definition: “the way an individual makes selections on a communication board or speech generating device” 4. Webster’s definition: the act of coming toward or near to; approach; a way of means of approaching, getting, using, etc.

ASHA’s definition of AAC “Augmentative and alternative communication (AAC) describes multiple ways to communicate that can supplement or compensate (either temporarily or permanently) for the impairment and disability patterns of individuals with severe communication disorders. AAC can involve unaided communication, such as facial expression, body posture, gesture, or manual signs, and aided modes (e.g. communication books, tablets). The appropriate mode or modes of communication are determined by the needs of an individual with disabilities and their communication partners.” Considering access to AT, or AAC within the classroom with a student with a complex body is expected to be assessed first, and then with a device. But this paradigm of assessment for AAC/AT was developed for adults, not children. Children have not yet developed full receptive vocabularies, they are inexperienced with many activities in daily life, and need to be actively engaged in play and work throughout the day to have ideas they want to share in communication. Access to activity, with children, is not “assessed” first, instead it is experienced, and is not seen as competent or predictable until they’ve been engaged in that activity hundreds of times. Children are curious, and explore, but their motor development is not a ladder, but has ebbs and flows of interest and engagement, as their bodies and brains develop. At different stages of development, interests in activity are quite variable. A 2 year old wants to do exactly what they’ve seen adults doing, use a real knife, manage a real pot, use a real hose. They do not want “pretend” items. They want to work at what they see happening about them, but they want to do all of it in one day, washing dishes, doing laundry, preparing a meal. They don’t want to spend the actual time it takes to complete these activities, but they want to do each one a bit. But a 4 year old really expresses imagination, loves little play or pretend objects, like small cars and trucks, small dishes, and small play houses, small legos to build and they like the things they build to stay in place and they can spend a great deal of time with one of these activities. But one thing all children who are growing and developing (without the interruption caused by a disability) do, is practice real life. They hear language, but they also practice language, not simply speaking, but they practice many non-picture producing words. They put their bodies in, over, under, next to, near, far. They look for this, for that, they reach for those, and choose these. When a child has not had the experience of using their body itself within the environment, how do they know the meaning of words. Especially the multiple meanings of many words like : I am climbing “over” the block on the floor, this meal is “over,” my shoe is “over” there. In short, when considering AAC, with children activity must be rich, full of real language and experience, and then encourage

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ideas and thoughts that a child wants to share with another. The activity can NOT initially be the AAC device. The adult needs to supplement the conversation about the activity and what is happening with the use of an AAC device. But the AAC device is used by the adult, and the activity is the important part for the child. Specific words can be chosen to be focused on within any activity, and then, after the activity, the adult can “write” or “record” what happened. This can happen with video, with photos, with drawings or just with words. A journal of activity can be developed, a journal of experiences, and include the use and development of activity with the adult using the AAC device. If a child was deaf, and needed to learn sign language we would not just give them a device which talked. We would learn sign, too, and use it with them. A child becomes interested in activity when they visualize themselves as competent in it. A child wants to learn to swim when they see others swimming. They want to ride a bike when they see others riding. They have a mental picture of themselves doing these activities. Then, their interests support them in the learning, and they can be very surprised that it takes time to become “good at it.” Children become interested in activity within their environments that they deem important. It is very easy to see any very young child, reaching for a mobile phone, or car keys. AAC devices need to be within our environments. Vocabulary development needs to be key to all students who are non-speaking. Everyone within their environment needs to be critically involved in teaching these words in context. Core words can be chosen by the teacher, or SLP, and all therapists and adults within the environment will use them purposefully for a specific time within their time spent with the student. PT’s and OT’s specifically need to include in their motor activities, experiences with the non-picture producing words. Like, “I am going to be helping your stomach go OVER the ball.” PUT your feet DOWN, when getting off the ball. I will HELP you” In summary: ACTIVITY first, USE of AAC device within the activity by the supporting staff, RECORD activity, so it can be reviewed and shared with the student, and ACCESS will come later. THE PHYSICAL CONFIGURATION OF THE CLASSROOM : The next challenge is looking at the ClassRoom itself. The students’ mobility within the classroom, and the situational seating and activity location all need to be observed. The physical configuration of the classroom. Let’s first look at self-contained classrooms. Frequently students with complex bodies are identified and taught in smaller groups with other students with complex bodies. More and more often, these classrooms are located within the schools their same age peers attend, and many students do participate in inclusionary settings for part of each day. However, the primary part of the day is within a single classroom, which contains a

great deal of equipment, which is not used for all activity. All teachers and therapists in these classrooms, wish for more space and more storage, as these classrooms were never expected to manage all the wheelchairs, standers, walkers, smartboards, computers, changing tables, small kitchens, and many adults. The number of adult bodies in this classroom at any given time and the amount of equipment used, is unexpected in standard traditionally sized classrooms. Also, none of us, therapists or teachers, took any courses in our preparatory years in college on how to manage these numbers of bodies and space. Consequently, in many of these classrooms, specific traffic patterns are unclear and changing. Let’s imagine a kindergarten student entering their school. They know where their classroom is, and knows how to get there, and they go there. Once they enter the room, they know what they are going to do first, and where they will then go next. This knowledge of the room, and where activities are located, and experience of getting there on their own, helps prepare the brain for focused activity. Compare this to a kindergarten aged student with a complex body, who is helped out of the bus, taken down to a classroom, and is “placed” by an adult somewhere within the room. This student does not control where they are going, their experience is just to wait until there might be some cues of what comes next. All human beings utilize early on a specific brain function called “cognitive mapping.” This begins at home as the very young child becomes independently mobile. This young child begins to move through their environment with purpose and intention, intention to discover that world, by getting close to objects, near people, touching items, and exploring. The child learns that as they move out of one room and to another, that certain objects reside in those places, and these things specifically relate to their personal, everyday life. Towels are in the bathroom, and so is the tub, and the sink. Toys may be in the bedroom and in the living room, but the refrigerator is in the kitchen. This movement through these areas and the knowledge of what resides there is called “cognitive mapping.”. It’s not simply a “map” like a geographical map, although those attributes are there, but there are relational attributes the brain begins to remember, and assimilate. Certain objects live in a space, and have a relationship to each other in that space. The knowledge of these items and the recognition of their place is one of the first of cognitive structures forming. This cognitive structure not only “records” this knowledge but is housed in “memory” as that develops too. In AT, cause and effect are spoken about as an initial“cognitive” construct, when, actually this is not a real cognitive construct. Causality itself moves through various stages in a child’s cognitive development, it is not a simple turn on/off paradigm. Babies already know that their crying is communicative, and that communication demand brings someone to them. Babies know

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that being put at the breast, is time to eat, being placed in a high chair, is time to eat, being placed in a car seat, is time to go. In short, cause/effect in AT, is not what is needed as a cognitive stratagem, but rather experience of moving throughout space independently, and seeing, feeling, and remembering what is where, and what belongs with what, or using and developing cognitive mapping, is vital. Cognitive mapping like causality, develops into more complex constructs over time, and then, especially cognitive mapping lays a foundation for understanding navigation. Navigation must be understood in order to use an AAC system. Navigation must be understood for reading. Navigation of an AAC device is needed to use it. Navigation is not just memorizing where a symbol is located, navigation is understanding pathways, and relationships, which is also a foundational cognitive construct of language development. Motor development plays right into this beginning language development. In fact, to initiate a conversation, at any time, a physical approach is needed. The physical approach is how one person starts a conversation. The approach initiates the relationship for the language to be used to communicate to another. To the communication partner, this approach presumes a communication initiation. (In my frequent consultations with school teams, I am asked “How do we get our student to initiate a conversation? The ability to physically approach another, is the communicative intent for initiation of communication.) When children are unable to move independently, they are provided supported walkers, and/or crawlers, to assist them. But when in classrooms, this equipment is not used (except in early intervention) within the classroom itself, but is relegated to specific therapy time, and exercise like walking down the hallway. Walking down the hallway certainly can be beneficial, but the considered use of a supported walker within the classroom itself, can support a student’s demonstration of intent, of interest, and of independent approach. These supported walkers, however, must be equipment that can support a child in either sitting and/or standing and/or moving, and many supported walkers in schools are simply small versions of adult walkers, which do not allow for getting close to tables or other objects or students. They are not hands free, so hands can explore, and are not readily able to turn, or move over varied surfaces, like carpeting, and linoleum. The KidWalk was developed for these reasons. (See photos). Not just a walker, but a seat, a stander, and able to support the student with a complex body in varied positions as their same age peers move and alter positions. The body must be active to engage the brain in focused activity. Stillness does NOT bring attention, attention is self-driven, and self- controlled and needs to be supported by independent postural movement and management. Readiness for activity to engage in activity, starts with a child moving themselves to the activity. Then, if that activity, requires getting into a chair and working at a table or desk, the

movement into the chair and getting to the desk, prepares the body for the control of managing the body and the mind ON the activity. Getting ready for activity and focus starts with the body’s transition from one place to the place of activity. Students with complex bodies are brought to a table or desk, and then wait while an activity is placed before them. They are then expected to “engage” and “demonstrate attention” and “endurance” to the activity and task, yet their brain and body are not “ready” as this readiness needs to come from their body’s participation in transition and their brains then focused interest and intention. If a student knew where the next activity was, and could move over to that activity, and then could be helped to be seated to pay attention, they would be more ready to focus. However, when the same seating and wheelchair that brings the student to school is the same position they are in all day, the body is challenged to be ready or focused. (Using same seating and positioning, again, is an “adult” concept and began with “adaptive seating” created for adults who had spinal cord injuries and who no longer have sensation, in their bodies. We have discovered, however, that even for them, changes in position are critical to all day postural management and focused attention to tasks.) CONSIDERATIONS/SUGGESTIONS FOR CLASSROOM CHANGE 1. Analyze classrooms and plan some re-organization that can include clear traffic patterns to specific activity areas or zones within the classroom. Place equipment needed in this activity zone that will need to be used within that activity zone. 2. Develop seating for the adults. Use rolling stools and/or folding chairs with seat cushions, both which can not only move to each activity, but also which can support the adult to sit beside, or behind, or near the student, depending on the task. “Beside” the student is a “tutoring/assist teaching” position, “behind” the student is a “comforting” “reassuring” position, and “near” the student is a vote of confidence for the student, “you can do this by yourself.” 3. Create clear rules of phone time. Create some communicative rules for all adults upon entry of an activity that includes the student. In other classrooms, no adult would even think about speaking out loud as the teacher is teaching, nor using their phone. The classroom is child centered and teacher and activity are respected. It is totally natural that in a classroom of non-speaking students, the “speakers” rule. The speakers then create the environment and the student-centered environment becomes adult oriented. Conscious and conscientious behaviors need to be encouraged and shared among all adults within the classroom. 4. Plan for AAC devices to be within the environment and used by ALL ADULTS at least part of the time.

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5. Invite same age peers to join activity, and include them in not talking but using an AAC device. This can be for a short period of time, (15 minutes, timed with a timer, no one can talk without a device). 6. THIS IS NOT EASY! Really changing the environment to be more student centered, to have clear traffic patterns to support cognitive mapping, to support more student mobility within the room, and planning how each adult will function within each activity, is not easy. Everyone needs to be involved, and compromises considered. A student- centered learning environment is not static, but it does require real planning, and use and frequent analysis, to work. SEATING FOR TASK ENGAGEMENT, AND ACTIVITY, AND ACCESS Children with complex bodies, (unless they have a spinal cord injury) have sensation, and bodies need to move to become engaged in activity. Not stay still. Seating for safe transport on the bus to get to school is very important. It has to be safe, and the child’s body must be safe within it. Strapping needs to include safe restraints, just as all seating in cars, and trucks for all of us. However, many of the students also have tilt in space chairs, and that tilt helps keep the body relaxed while being transported, just as car seats are tilted.

This type of seating promotes body relaxation. It is symmetrical, and often referred to as 90/90/90 seating. There is a pelvic belt, usually hip guides, often a pommel, a chest harness, trunk laterals, and ankle and foot straps, as well as head rest, and a tray. The seat and back are mounted at a 90 degree angle to each other. The front riggings, are mounted so that the knees and ankles are also at 90 degrees. These supports are all padded, and pulled snugly to ensure stillness of the body, against the surface of the seating system. These structures, supports and restraints are needed for safe, passive transport as many students have increased tone, involuntary movement, seizure disorders, etc. This seating is important. It brings the student to school safely. This same seating, seating to support relaxation of the body, is also important when the child is fed. Being fed, requires the child’s body to be relaxed, and when the child’s body is also tilted slightly (using the same seating described above), the head will flex slightly, which can support increased adequate swallowing. However, being in this same position to be engaged in activity within the school day, is not supportive of the brain/ body focus. The body cannot be resting, for the brain to work. The body must be purposefully active, and its chosen postures support task engagement. The more the body (anybody’s body) is in contact with a surface the more it will “give in” to that surface. Like a LazyBoy, there is a footrest, headrest, armrests, as it is meant to support rest and relaxation. No one sits in a Lazyboy to engage in

While Emily is in her Kidwalk, she is able to look up from her work.

Emily in the Kidwalk, working in her classroom with props, for a story.

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a task. Tasks require eye/hand coordination, and eye/hand coordination require pelvic stability and with bearing. When the body is relaxed, the arms are relaxed and, in fact, the arms can’t find “power” to actually be useful in tasks. (We don’t try and prepare a meal from a Lazyboy, we couldn’t find the power to hold a knife, much less focus on cutting). Seating for activity, seating for task engagement, seating for using the body, has to have much less contact with the surface of the seating system. Also, for children, feet need to be on the floor, this is how the body “finds” gravity, and gravity, itself, is used by the body to find the power to use the extremities for intentional activity. Mentioned earlier, the Kidwalk can be used throughout the day in activity within the classroom. A High/Low chair is also equipment to be considered within the classroom. R82’s X-Panda, is an example of this type of seating. Meet Emily, and see her use of systems in the classroom. Emily can be seen in the Kidwalk a table within her inclusionary classroom, engaged with a book and some props used to supplement a story that we read together. Then, another photo, is Emily being fitted for the High Low chair, and then it’s holding a head array with electronic proximity switches (sensors) which she can use to access specific software on the classroom computer. There is also a photo of Emily and her mom at home,

Emily working at the computer with head array, in XPanda

with her mom holding an electronic proximity sensor as Emily and she play a game. Access needs to be used and not just “tested” but used to manage the activity. The activity is important, and access needs to be experienced. So with seating that allows the body to be weight bearing, and engaged, then an electronic switch which does not require force, (its powered by a battery), and held by a person, who can use it on themselves as well, is a great way to start. Then, the proximity sensors can be embedded within a head rest (head array) and fit onto the high/low chair and can work on the Kidwalk. Transparency with access is key. Switch hits should not be counted, nor judged for consistent accuracy. The child must be interested in the activity. The child will make mistakes, but the engagement in the activity is the most important. Human beings are not able to be predictably “motor consistent.” No matter how much practice, to matter how skilled, motor behavior in human beings is vulnerable. Motor competency is not developed by motor accuracy. Instead a neuronal pathway is created within the brain that includes the process of task engagement. In short, a brain/body connection. When an activity is intentionally participated in regularly, with the knowledge and anticipation of beginning, middle and end, a neuronal pathway is created.

Fitting Emily’s body into the High/low chair, XPanda

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Emily at home with Mom, playing a switch game on her PC, with a proximity switch with Mom. Mom is able to use the switch too, and place it easily for Emily.

This is like a shortcut. It’s how the body becomes efficient, but it is not “automatic” nor does it predict perfection. Homo sapiens are processing beings. These processes develop in each of us uniquely as we grow and develop and participate in activity. But at any given moment, mistakes can be made, but as a process we can ‘repair” those as the pathway is based on the activity, not singular acts. LET’S REMEMBER THIS: A big challenge for students who are learning AAC and the use of the AAC device is a lack of experience with the machine itself, its software and its navigation strategies. These all need to be taught too. AAC devices are not just a “voice.” They are machines, that contain software, that requires navigation. They have vocabulary that is pre-determined, or novel and must be taught. For the student to be “communicative” there is a lot of activity and teaching that must be done cooperatively, and access will,

become more competent. Accsss is a part of the activity and it will grow and develop as task engagement with activity grows.. EQUIPMENT REFERRED TO WITHIN THIS ARTICLE: The prices of this equipment vary, and change. Each company can be contacted from information on their web-site for the current costs. 1. Kidwalk; from Prime Engineering; www.primeengineering. com 2. R82 High/Low Chair; www.etac.com 3. Adaptive Switch Lab’s single proximity sensor; www.asl- inc.com 4. Adaptive Switch Lab’s pediatric head array with 3 sensors ; www.asl-inc.com

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