Abstract

The Driving to Learn project explored what people with profound cognitive disabilities could achieve from practice in a joystick-operated powered wheelchair and what facilitated their eventual achievements.

Grounded theory methodology was applied for a project involving 45 children and adults with profound cognitive disabilities, 64 with milder degrees of cognitive disabilities, and 17 infants with typical development.

The findings included two lines of development: (1) growing consciousness of joystick-use and powered mobility use, and (2) learning communication by driving. An emerging approach for facilitating tool use learning also nurtured the participants' alertness, attention to social exchange, development of sense of self, anticipation, intentionality and a will in mind that was communicated through showing by driving.

Significance: Becoming capable of showing communicative intentions, even in a limited sense, changed the attention, interaction and responsiveness of social others. This in turn increased the participants' opportunities for development of more shared meanings and communication.

Introduction

People with profound cognitive disabilities do not use symbols and spoken language for communication, and their understanding of speech is limited to fragments of other people's word streams. They characteristically have various additional limitations regarding, for example, feeling experience, self-recognition, motor control, perception, sensation and emotional expression. These limitations further complicate their performance of activities, interaction and communication with other people, as well as their participation in society (Nakken & Vlaskamp, 2007). They usually express feelings of dislike and like by sounds, mimicry, facial expressions and body language. Thus, elongated time may be needed for talkative and able-bodied social others to become sensitized and able to recognize and interpret their dissimilar modes of communication (Hall, 1959/1990; Nilsson, in press). Thereby, in general this population is most vulnerable and dependent on other people's engagement, responsiveness, and assistance regarding both communication and activities in their daily life (Nakken & Vlaskamp, 2007).

Children and adults with profound cognitive disabilities typically do not get access to advanced assistive technology devices, neither for communication nor for powered mobility. This is due to low expectations of their abilities to learn performance of the sequential procedures involved in the use of such technical equipment. In RESNA's recommendations concerning powered mobility in pediatrics, this population is actually excluded as not being appropriate candidates for provision of powered mobility (Rosen, Arva, Furumasu, Harris, Lange, McCarthy et al., 2009). In AOTA's publication on adult people with intellectual disabilities, the population with profound degrees of limitations is neither mentioned for provision of technology for communication, nor for powered mobility (Ross & Bachner, 1998). Today, new scientific publications point towards benefits of specific pedagogic approaches and longer periods of practice as an alternative to evaluating people by IQ-measuring, testing of prerequisite abilities, and assessing readiness before providing opportunities to practice advanced technology use (Hardy, 2004; Nilsson, 2007). Hardy also raises the question of prerequisite abilities emerging with practice. Teaching methods for people with severe or profound cognitive disabilities are often based on principles of typical child development, and encompass sensory and environmental enrichment and stimulation (Kontu & Pirttimaa, 2009). These alterations in the knowledge base indicate a need for changes in the recommendations concerning provision of more advanced assistive technology devices for people with cognitive disabilities.

The author's (LN) research interest in powered mobility practice was induced by an extraordinary clinical experience in the field of pediatric rehabilitation. In 1992, after six years of practice, a 13-year-old boy with profound cognitive disabilities and several additional limitations learned how to use a joystick-operated powered wheelchair in his special school environment. This inducing event led to the initiation of a study of what children with multiple disabilities could achieve from practice in a joystick-operated powered wheelchair (Nilsson, 1996). The findings from this study showed that the two participating preschool children attained an increased alertness and a growing understanding of how to use their hands (Nilsson & Nyberg, 1999 and 2003). These promising achievements led to the engagement of more participants in a constantly expanding study that was later named the Driving to Learn project.

The primary aim with the project was to explore what children and adults with profound cognitive disabilities could achieve from practice in a joystick-operated powered wheelchair. A secondary aim was to explore what hindered or facilitated this population's eventual achievements.

Method

The project's methodological approach was Classic Grounded Theory with constant comparative collection and analysis of data (Glaser & Strauss, 1967; Glaser, 1978 and 1998). In Nilsson (2007), methodology, participants, procedures and comparisons are presented in a more thorough way.

Participants

Over a period of 12 years, 45 children and adults with profound cognitive disabilities and 64 with milder degrees of cognitive disabilities were engaged in practice in a joystick-operated powered wheelchair. Also, 17 infants with typical development were engaged in the powered wheelchair practice to enable comparison of 'typical' achievements with indicators of achievements collected during practice with people with cognitive disabilities.

Procedures, data collection and analysis

The 45 participants with profound cognitive disabilities practiced in a joystick-operated powered wheelchair during periods from one month to six years. LN and other facilitators carried out the practice sessions at pediatric rehabilitations, special schools, a day center for adult people with intellectual disabilities, primary health day care, or at a participant's home. The 64 participants with other degrees of cognitive disabilities practiced from a range of one occasion up to periods of three years. The 17 infants made one to six trials each, if more than one there was an interval of one month in-between trials.

Data was collected in the form of field notes, video-recordings of practice sessions and interviews with participants (if possible) and acquainted persons. Focus for the constant comparative data collection and analysis were the participants' behaviors, acts, activities and interactions during the practice sessions. Different indicators of achievements were compared with signs of success or failure and with the emerging pattern of a tool use learning process. Comparisons were also made with literature from various fields such as: mother-infant interaction (Binett, 1988); dialogical pedagogy (Freire, 1970); developmental psychology; symbolic interactionism (Mead, 1934/1967); neuropsychology (Luria, 1973/1984); activity theory (Leontjev, 1977; Vygotsky, 1978 and 1986/1994; Luria, 1979, a) and b)); sensory integration (Ayres, 1987) and occupational science (Wilcock, 1998, Yerxa, 1998 and 2000).

Findings

The constant comparative data collection and analysis revealed findings showing that the participants' practice in powered wheelchairs nurtured their achievements in two parallel lines. The main line regarded learning joystick-use and powered mobility use, while the parallel line regarded learning powered wheelchair mediated communication.

Main line: Growing consciousness of joystick-use and powered mobility use

The findings showed that the powered wheelchair practice nurtured the participants' growing consciousness of how to use a joystick-operated powered wheelchair as a mobility tool (Nilsson, 1996; Nilsson & Nyberg, 1998; Nilsson & Nyberg, 1999 and 2003; Nilsson & Eklund, 2006; Nilsson, 2007). The findings included the identification of an eight-phase process of growing consciousness of joystick-use; a tool for assessment of joystick-use which comprised of a simplified scheme with descriptions of each phase in the process; and facilitating strategies for each of the phases (Nilsson, 2007; Nilsson, Thulesius, Nyberg & Eklund, in press). The assessment tool was tested for inter-rater reliability with very good results (Nilsson, Eklund & Nyberg, submitted). 8 out of the 45 participants with profound cognitive disabilities were able to learn goal-directed steering using a joystick, even though it took a considerable amount of time (Nilsson, Nyberg & Eklund, 2010). Finally the use of classic grounded theory methodology led to the discovery of the grounded theory of de-plateauing, a theory that explains how people can exceed their own or others perceived limitations for development, growth and learning (Nilsson, 2007).

Parallel line: Powered wheelchair mediated communication

The findings showed that the powered wheelchair practice mediated the participants' development of social interaction and communication, as well as a sense of self, object-interaction and agency. The line of mediated communication was initially concealed by the observational focus being indicators of achievements regarding joystick-use and powered mobility use. Consequently, the participants' powered wheelchair mediated communication was consciously recognized and reflected on later. With rising awareness it became obvious that the participants emerging understanding of the relationship in-between their actions with the joystick and the motion of the chair, was followed by their parallel development of understanding of their agency and possibility to make choices. Their emerging capability to make choices was communicated by making the chair go reverse to go away from — showing dislike; or driving forward to go to — showing like or will to be together with. The participants learned to use a mobility tool at the same time as they developed their ability to communicate by driving — showing by driving.

A special approach for interacting and communicating with the participants who had profound cognitive disabilities emerged as a natural and instinctive part of the powered wheelchair practice. However, the growing understanding of how to facilitate the participants' curiosity, sense of self and preverbal communication was implicit and went unrecognized during the first years of the project. The emerging approach involved interaction and activities to do the following: establish bonding and relationships with the participants; to increase their alertness and attention regulation; to increase their body and self-recognition and awareness; to interact and communicate in modes as mutual as possible; and to stimulate concept formation and limited language understanding. This approach was initially adopted as a self-evident necessity and not thought of with any conscious awareness. When the awareness of details in the approach became explicit, they surfaced as a set of facilitating strategies that could improve learning of how to use the joystick to operate the powered wheelchair.

The most important features of the facilitating approach were that it involved bonding and building a relationship between facilitator-participant; it demonstrated tool functions by guidance and communication using slow pace, simple language and awaiting of responses; it encouraged the participant's own initiatives to explore the powered wheelchair and experiment with the joystick; it allowed safe experience of collisions; it stimulated concept formation and language understanding at a very simple level; and it gave the participants an opportunity to make deliberate choices.

An example of learning how to show by driving

A detailed description illustrates how LN co-constructed a practice session in a joystick-operated powered wheelchair with a four-year-old boy with profound cognitive disabilities, visual impairment, sensory defensiveness and very limited interest in using his hands to touch, hold and manipulate objects. In the description LN is replaced by 'I' to make reading easier.

After an initial bonding interaction the boy was seated in the powered wheelchair, and a tray with a joystick mounted in the midline was attached to the armrests of the chair. He immediately stretched out his arms from the sides of his body, avoiding touching or being touched. I knelt in front of him talking slowly with a soft voice to reassure him and make him feel safe despite the unfamiliar situation. After a while, he began to relax a bit, shown by his body being less tense, even though his arms still were kept away from the chair and the tray. I tried to make him interested in the joystick by picking on it with my finger. He turned his head a bit to the side and seemingly listened to the sound, but he did not move his arms that still were stretched out from his body. Inviting him with more slow talk and making the picking sound on the joystick he, after a long while, made an explorative act. He leaned forward and took the joystick in his mouth; by doing so he accidently set the powered wheelchair in motion and made it reverse ten centimeters. This startled the boy and he instantly showed a higher level of alertness. Using a very simple language I commented on what he had done, pointing at the relationship between his mouthing of the joystick and the motion of the chair. He leaned backwards and closed his eyes; I repeatedly picked on the joystick again leaving silent intervals in-between. After a while, he leaned forward and did a new mouthing with similar effect, only this time he made eye-contact with me for the first time. I said: You made it move! With a short delay he made a new mouthing, making the chair reverse half a meter. I said: Now you moved it again! Again the delay was a bit longer, and I started picking with my finger on the joystick. Then he quite rapidly mouthed and reversed a bit, then looked up, mouthed and reversed in a curve, then looked up, as if exploring how he could use his mouth to set the chair in motion. All along he held his arms stretched out from his body.
At that point, I gently guided his arms to the joystick to give him the feeling experience of the tool. He disliked it, but after a while his tolerance increased—as he seemingly liked the clicking sound that was activated from the short pulls on it. By this guided interaction he could experience the same movement effect from using his hands as from using his mouth (which he obviously preferred). After a while,he showed a growing irritation with this interplay. Then I put a little doll made of yarn on the tray in front of him. He quickly touched it just to get it off the tray and I put it back; this procedure was repeated several times and again he was irritated. I said: GO AWAY; while guiding one of his hands on the joystick causing a reverse move with the chair. He looked at me, saw the distance between us, and I confirmed that he had gone away. I said: Now I give you a new thing, and repeated the procedure all over. When he once more was irritated, I said: Now what? How do you get away? This time less guidance of his hands was needed to make him co-operate with activation of the joystick to get the chair to move in reverse. When he got irritated the third time, he actually used his mouth to reverse away from me; but that was all right as he now had understood that he could use the joystick to go away from me when he wanted to.

Small children are usually curious and interested in reaching for objects, touching, grasping and manipulating, but this was typically not the case for the children with profound cognitive disabilities. Thus, the possibility to get away from something unpleasant and irritating worked as a drive to initiate the boy's learning of how to communicate dislike by driving away. Months later he slowly reached a point where he began to use his hands to explore the joystick and the different effects he could cause with different hand movements on it. Moreover, at times he could choose to drive a short distance forward to get things he liked.

Building a relationship by establishing trust

The children and adults with profoundly limited understanding of self, others and the environment could react very differently to encounters with the unfamiliar situation of practice in a powered wheelchair. Some stayed open, 'social' and positive while others closed and became passive or even aversive. In any case, there was a need to establish trust and a sense of security to reach a limited level of connection and bonding, which was the base for creation of a sense of neutrality in the situation and maybe even a minimal or vague curiosity. The bonding approach involved being close, seeking eye-contact, moving and talking slowly and softly, leaving space between the words in the simplified language and using touching and holding as securing acts.

The opportunity to accidently cause an effect

An early finding was that the participants wanted to explore the joystick and the different parts of the powered wheelchair with both hands. Therefore, early on the joystick was mounted in the midline of a Plexiglas tray, which was attached to the armrests of the powered wheelchair to make possible manipulation with both hands. Thus, a participant could accidently activate the joystick by spontaneous arm or hand movements, or by mouthing. At unintended activation of the joystick, the powered wheelchair was set in motion in any direction. This feeling experience typically caused a startled reaction that increased their attention; thus, such repeated experiences were their first steps towards growing consciousness of the cause-effect relationships between their action with the joystick and the motion of the chair.

Startled reactions and attention regulation

The participants' startling reactions, which instantly increased their attention level, seemed to have a long-term effect of nurturing anticipation of more feeling experiences in the powered wheelchair. For example, a boy of six, who had practiced in a powered wheelchair for a couple of years, could have a session with his physiotherapist and fall into a deep sleep. Coming to the powered wheelchair session in this state, he instantly woke up. And when seated in the chair he straightened his body, lifted his head and held his eyes wide-open— ready to attain more feeling experience of mobility; and this happened repeatedly.

Recognition of body, self and agency

Typically the participants with profound cognitive limitations had a very limited sense of their body. Even if they had the physical ability to move, they had a most limited understanding of how to co-ordinate posture and limb movements for purposeful activities such as walking, reaching and grasping. After numerous sessions where the interaction included touch, deep pressure, assisted hand grasp, manually and socially guided and prompted activity in the powered wheelchair, the participants slowly grew more aware of themselves, their body parts and their ability to use them to explore and cause different effects. Their extended recognition of self and exploration of others and the environment also was displayed in other situations, such as when being spoon-fed sitting in someone's lap. They began to reach out to touch the arm or hair of the feeder, or even stretched out to touch the edge of the table and the plate. Furthermore, their newborn sense of agency assisted their understanding of the 'idea of mobility,' which also made them actively explore other possibilities to turn around or move about, either on the floor or in their walkers, even though in a very limited way.

Awareness of others, events and their relationships

The occasions when the participants' awareness of relationships between self-others-events could be revealed were rare, due to their limited ability to communicate their experiences and understandings. However, at one time a seven-year-old boy with profound cognitive disabilities could clearly indicate that he recognized and connected LN to the powered wheelchair practice, and this was at a time when he was out of the practice situation. He was sitting in his personal assistant's lap in a waiting room at the pediatric clinic, a place not connected to the wheelchair practice. LN was walking by and just stopped to say hello; when hearing her voice and feeling her touch, he started rocking and made a wroom-wroom sound; a response easily interpreted as him recognizing LN as the person connected to his practice in the 'moving chair'.

Turn-taking and choice-making

The participants' ability to take turns in interaction and to make choices was facilitated by using two opposite approaches. First approach: guiding and prompting of activity on the joystick and using slow simple talk about what was the effect of the participant's acts. Second approach: encouraging own initiatives by saying 'now you try,' and staying back, being silent to allow time for contemplation, processing of feeling experiences and own initiatives to act. The two approaches were applied in pace with each person's tempo and time needed for contemplation and processing. It was a difficult task to learn to read each person's special signs for when to shift between the two approaches. However, when the balance between input, time for processing and forming simple action plans was right, the participants could show the most surprising initiatives to act in a turn-taking and choice-making way.

Concept formation and simple language understanding

The interaction during practice in the powered wheelchair also involved an aiming at establishing the participants' understanding of the relationships between the concepts for body parts and wheelchair parts and the concepts for the acts and activities they performed with these body and wheelchair parts. The logic behind this approach was that simple concept formation assisted the development of an ability to follow very simple verbal instructions given from a distance. In turn, the possibility to facilitate from a distance assisted the participants' emerging sense of being in control of the exploration and action with the tool.

Mediated communication — showing by driving

To learn how to use a powered wheelchair for interaction and communication with others, if only in a most simple and preverbal manner, the participant required a certain level of alertness and attention; numerous feeling experiences from physical and social interaction; individually paced time for processing; constant encouragement to take own initiatives to act and explore the effects of acting; and social-object-powered wheelchair-interaction to grow conscious of internal and external relationships. They needed continuous facilitation, intertwined with time for contemplation, to be able to recognize the many relationships between body parts, objects, self, others, environment and different effects of interaction.

The learning process took a very long time and involved endless attempts, but when the first signs of 'showing by driving' become visible, it was an extraordinary event. The most important outcome for the participants' who made this achievement was that from then on, they were perceived and approached differently by these social others who had experienced their emerging communicative ability. They became somebody capable of showing and expressing initiative, a person with will and aims in mind, although at a very simple level.

Discussion

Findings from the Driving to Learn project showed that people with profound cognitive disabilities could learn to use a powered wheelchair as a means for transforming very simple, but meaningful, messages in their face-to-face object-powered wheelchair-interaction with social others, even though they did not develop spoken language or become skilled and secure navigators of a powered wheelchair.

Mediated communication in the typical sense involves channels other than face-to-face communication with spoken language i.e. computer, television, video, radio, or books. In the case of people with profound cognitive disabilities, their communication is not based on spoken language, but rather on reactions, body-language, preverbal communication and signals as is the case with typically developing infants (Bremner & Wachs, 2010). Thus, face-to-face mutual and contingent reciprocal interaction with others and objects are essential channels for their development of communication. Due to similarities with infants' preverbal communication, it is highly relevant to make comparisons with infant development to enhance the understanding of how preverbal communication in people with profound cognitive disabilities can be mediated via a tool such as a powered wheelchair.

Wakefulness, alertness and attention

Sensations of proprioception and perception in action are needed to maintain the level of cortical arousal that is necessary to sustain a waking state (Lewis, 1978). Fetal sensitivity matures in a special order: first comes somesthetic sensitivity corresponding to tactile, vestibular and pain stimulation; second comes chemosensory sensitivity corresponding to smell and taste; third comes audition corresponding to pitch, amplitude, and phrasing of sounds; finally comes vision corresponding to light and optical array (Rochat, 2011). Active seeking of constant sensory variation and reacting to sudden stimuli received by the own intentional movements assist the coordination of the sensory system and the body, which is crucial to avoid sensory deprivation (Lewis, 1978). Sensory systems that are in place and functional are a pre-requisite for the ability to sense the world by feeling experiences (Rochat, 2011). Infants markedly increase the proportion of time they spend awake and alert around the age of two months (Rochat, 2011). Around this time they also begin to show social smiling and start to develop repertoires of communicative actions, controlling others and resources in their environment (Rochat & Striano, 2000). A certain level of wakefulness, alertness and attention is necessary to perceive sensations, process, execute conscious action and partake in social interaction.

Sense of self

Infants, as with people with profound cognitive disabilities, need stimulation by the active process of intermodal perception and exploration to develop a sense of themselves as situated, differentiated and as an agent in relation to others and their close vicinity (Rochat & Striano, 2000, Rochat, 2010). However, this is a difficult task as they typically don't have the inborn drive and curiosity that leads an infant to perceive and explore their own body, objects and the environment in action. They are totally dependent on mutual interaction with social others to develop an implicit sense of self-recognition. Feeling experience and self-awareness co-emerge, and both are necessary and they co-define an infant's explicit sense of self (Rochat, 2011).

Orientation and intentionality

Feeling experience gives purpose and orientation to the explorative acts performed by an infant with typical development, or to a child or adult with profound cognitive disabilities. However, becoming a goal-oriented and purposeful being is heavily dependent on reciprocal interaction with social others (Rochat, 2007, and 2011). Reciprocal social exchanges with more advanced social others are necessary for the development of intentionality (Rochat, 2007 and 2010). This idea has similarities with the idea of working in the zone of proximal development (Vygotsky, 1978; Wells, 1999) and taking over gestures from others (Mead, 1934/1967). To become intentional, the infant or person with cognitive disabilities needs to develop a distance between self and others. Furthermore, they need to adopt a contemplative stance, meaning becoming able to pause and reflect about feeling experiences, anticipated effects or how to achieve goals. To do this requires a mental extraction and anticipation beyond the here and now of perception and action (Rochat, 2007).

Imitation and communication

Preverbal imitation is important for development of communication with others, cognition and understanding of others minds and intentions (Bremner & Wachs, 2010). Continuous coordination of the attention of self and others to actions, gestures and words is required to develop internal representations, understanding of intentions and meanings and to reach a shared understanding and successful mutual interaction and communication (Reinhartsen, 2000; Lock & Zukow-Goldring, 2010). The development of communicative behaviors in people with profound cognitive disabilities is determined by their social others' momentary attention; behavioral-emotional state; level of perceptual and cognitive competence; previous integrated experience and knowledge; and empathy mind-minded capacity to take the sender's perspective and respond accordingly (Papoušek, 2007). Communication is a highly important issue in working with people with profound cognitive disabilities, but their use of preverbal communicative behavior poses a real challenge to understanding their needs, thoughts and feelings. Thus, social others may have great difficulties with interacting and developing shared meanings with them (Hostyn, Daelman, Janssen & Maes, 2010).

Communication mediated by powered wheelchair

Considering the comparisons with infant development, and the communicative difficulties of people with profound cognitive disabilities, how come a joystick-operated powered wheelchair can be a useful mediator of their communication? First of all, the Driving to Learn method is based on bonding a safe relationship between the facilitator and the powered wheelchair user. The use of the facilitating strategies is social and reciprocal in its nature, and it involves face-to-face interaction and touch to guide and prompt the powered wheelchair user's feeling experience; exploration of different effects; and different relationships between body-self-object-tool-facilitator-environment-space-time. The powered wheelchair actually consists of two tools; as a whole it is a machine tool - a vehicle driven by two motors, and in part it is an operating tool — a joystick for control of vehicle navigation. The powered wheelchair in concert provides the user with a great variation of sensations and feeling experiences (except for taste and smell). With the joystick placed in the mid-line of the body and quite close to the trunk, the user's activation of the joystick usually sets the chair in a circling motion, due to beginners typically making their acts with the joystick in diagonal directions. They also begin with pulling before pushing, and if mouthing the joystick, they typically reverse—but not for a long distance. Manual guidance of grasping the joystick provides touch and deep pressure. The circling movement provides vestibular sensation that increase wakefulness and attention; it demands for postural adaptation; and it also provides enriched sensation of vision but also some audio. The joystick can be explored with coarse imprecise movements, and even with the mouth. It is attached and cannot be thrown away, still it is movable and possible to hit, pull, push and manipulate in different directions resulting in numerous effects. Thus, the exploration is constantly changing the user's relationships between themselves, others and the environment, often in a surprising way, now and then causing startling reactions. The temporally adapted intertwining of social reciprocal exchanges and silent moments for contemplating and processing support the development of intentionality and agency. Altogether, these features keep the user's attention at a high level; provide numerous feeling experiences; speed up the emergence of sense of body and self; stimulate orientation, intentionality, sense of agency and control; and develops internal representations and an aim in mind. All of these abilities are necessary to stay alert, to attend to social exchange, and to develop anticipation, intention and a will to be communicated.

Conclusion

The findings from the two parallel lines of the project lead to the conclusion that Driving to Learn™ in a joystick-operated powered wheelchair is a method that can assist people with profound cognitive disabilities in their learning of tool use, but that it can also assist in self-recognition, sense of agency and learning of how to use the powered wheelchair to mediate their intentional communication.

To become a person able to communicate a will or an aim in mind, even if in a very limited sense, displays a potential ability that might have been hidden. If a communicative potential is unveiled to social others they may change to an interactive approach with a higher level of attention and responsiveness, which might increase the opportunities for developing shared meanings and communication.

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