Children and youth who sustain a traumatic brain injury (TBI) and/or spinal cord injury (SCI) may have temporary or permanent disabilities that affect their speech, language and communication abilities. Having a way to communicate can help reduce a child’s confusion and anxiety, as well as enable them to participate more actively in the rehabilitation process and thus, recover from their injuries. In addition, effective communication with family, care staff, peers, teachers and friends is essential to long-term recovery and positive outcomes as children with TBI and SCI are integrated back into their communities. This article describes how rehabilitation teams can use augmentative and alternative communication (AAC) and assistive technologies (AT) to support the communication of children recovering from TBI and SCI over time.
Children and youth who sustain a severe traumatic brain injury (TBI) and/or a spinal cord injury (SCI) often experience sequealae that can affect their ability to communicate effectively. In early phases of recovery, many children with TBI and SCI are unable to use their speech or gestures for a variety of medical reasons related to their injuries. As a result, they can benefit from augmentative and alternative communication (AAC) interventions that specifically address their ability to communicate basic needs and feelings to medical personnel and family members and ask and respond to questions. AAC approaches may include having access to a nurse’s call signal; strategies to establish a consistent “yes” “no” response; techniques that help a child “eye point” to simple messages; low-tech boards and books that encourage interaction with family members and staff; communication boards with pictures or words; and speech generating devices (SGDs) with preprogrammed messages, such as “I hurt” “Come here,” “Help me please!” “When’s mom coming?”
As children with TBI and SCI recover from their injuries, many no longer will need AAC. However, some children face residual motor, speech, language and cognitive impairments that affect their ability to communicate face-to-face, write or use mainstream communication technologies (e.g., computers, email, phones, etc.). A few may require AAC and assistive technology (AT) throughout their lives. Having access to communication through AAC and AT enables these children to participate actively in the rehabilitation process and ultimately, in their families and communities. Without an ability to communicate effectively, children with TBI and SCI will face insurmountable barriers to education, employment, as well as establishing and maintaining relationships and taking on preferred social roles as adults.
All AAC interventions aim to support a child’s current communication needs while planning for the future (Beukelman and Mirenda, 2005). However, the course of AAC treatment for children who sustain TBIs and SCIs is different because of the nature of their injuries is different. In addition, the focus of AAC interventions will differ for very young children (e.g., shaken baby syndrome) who are just developing speech and language and for those who were literate and have some knowledge of the world prior to their injuries (e.g., 16 year-old involved injured in a motor vehicle accident). For young children, the AAC team will focus on developing their language, literacy, academic, emotional, and social skills, as well as ensuring that they have a way to communicate with family members and rehabilitation staff. For older children, AAC interventions build on residual skills and abilities to help remediate speech, language and communication impairments as well as provide compensatory strategies that support face-to-face interactions and ultimately communication across distances (phone, email) with team members, family and friends. AAC intervention goals seek to promote a child’s active participation in family, education, community and leisure activities and aim to support the establishment and maintenance of robust social networks (Blackstone, Williams, and Wilkins, 2007; Light and Drager, 2007; Smith, 2005).
While a variety of AAC tools, strategies and techniques are available that offer communication access, successful AAC interventions for children with TBI and SCI also require that medical staff, family members and ultimately community personnel know how to support the use of AAC strategies and technologies because the needs of these children change over time. Speech-language pathologists, nurses, occupational therapists, physical therapists, physiatrists, pediatricians, and rehabilitation engineers work collaboratively with the child’s family and community-based professionals to establish, maintain and update effective communication systems. Ultimately, the goal is for children to take on desired adult roles; AAC can help them realize these goals.
2. Pediatric TBI and AAC
AAC intervention for pediatric patients with TBI and severe communication challenges is an essential, complex, ongoing and dynamic process. AAC is essential to support the unique communication needs of children who are unable to communicate effectively. It is complex because of the residual cognitive deficits that often persist and because many children with TBI have co-existing speech, language, visual, and motor control deficits (Fager and Karantounis, 2010; Fager and Beukelman, 2005). AAC interventions are ongoing and dynamic (Fager, Doyle, and Karantounis, 2007) because children with TBI experience many changes over time and undergo multiple transitions. Light et al. (1988) described the ongoing, three-year AAC intervention of an adolescent who progressed through several AAC systems and ultimately regained functional speech. DeRuyter and Donoghue (1989) described an individual who used many simple devices and a sophisticated AAC system over a seven month period. Additional reports describe the recovery of natural speech up to 13 years post onset (Jordan, 1994; Workinger and Netsell, 1992).
2.1. AAC Assessment and Intervention
Assessment tools can help identify and describe the cognitive, language and motor deficits of patients with TBI and provide a framework for AAC interventions. The Pediatric Rancho Scale of Cognitive Functioning (adapted by staff at Denver Children’s Hospital in 1989) is based on the Ranchos Los Amigos Scale of Cognitive Functioning (Hagan, 1982). Table 1 describes general levels of recovery, based on the Pediatric Rancho Lost Amigos Scale, and gives examples of AAC intervention strategies that rehabilitation teams can employ across the levels as described below.
Levels IV and V. AAC Goal: Shaping responses into communication
In the early phase of recovery, pediatric patients at Levels IV and V on the Pediatric Rancho Scale are often in the PICU, the ICU, acute hospital or acute rehabilitation environment. At Level V (no response to stimuli) or Level IV (generalized response to stimuli) AAC interventions focus on identifying modalities that children can use to provide consistent and reliable responses. For example, staff can use simple switches (e.g., Jelly Bean®, Big Red® and Buddy Button from AbleNet), latch-timers (e.g., PowerLink® from AbleNet) and single message devices (e.g. BIGmack® and Step Communicator® from AbleNet) to support early communication (see Table 1 for some examples). Because children’s early responses may be reflexive rather than intentional, the family and medical/rehabilitation team can also use AAC technologies to encourage more consistent responses. Families provide valuable input about the kinds of music, games and favorite toys a child finds motivating. The team can then use these items to evoke physical responses from the child. For example, if the family identified the battery-operated toy Elmo® from Sesame Street®, the rehabilitation team might present Elmo singing a Sesame Street song and then observe to see if the child’s responds. If the child begins to turn her head when Elmo® sings, the team might attach a switch with a battery interrupter to the toy and ask the child to “hit” the button and “play the Elmo® song”. In doing so, the team can learn several things. For example, the team may note that a child is able to follow commands, indicating cognitive recovery. The team may also begin to consider alternative access methods for children with severe physical impairments, i.e., head movement may become a reliable way to operate an AAC device or computer in the future. It is difficult to predict whether a child will recover natural speech during early stages of recovery.
2.2. Middle Levels II and III: AAC Goals: Increase ability to communicate with staff, family and friends and support active participation in treatment
Pediatric patients at Levels III (localized response to sensory stimuli) and II (responsive to environment) become more engaged in their rehabilitation programs as they recover some cognitive, language and physical abilities. During this phase, long-term deficits that affect communication become apparent (e.g., dysarthria, apraxia, aphasia, attention, initiation, memory, vision, spasticity). Dongilli, Hakel, and Beukelman (1992) and Ladtkow and Culp (1992) also report natural speech recovery in adults after TBI at the middle stages of recovery. Continued reliance on AAC strategies and technologies is typically due to persistent motor speech and/or severe cognitive-language deficits resulting from the injury (Fager, Doyle, and Karantounis, 2007).
AAC interventions at these levels focus on using a child’s most consistent and reliable response to communicate messages, encourage active participation in the rehabilitation process and increase interactions with family and staff. AAC interventions always take into account the child’s developmental level and interests. Table 1 gives some examples of AAC technologies employed during these Levels III and II. For example, Jessica was admitted to the hospital at 18-months with shaken baby syndrome. At Level II, she began responding to her parents by smiling and laughing and also began to manipulate toys with her non-paralyzed hand when staff placed a toy within her intact field of vision. However, she did not exhibit any speech or imitative vocal behaviors and her speech-language pathologist noted a severe verbal apraxia. Nursing staff and family members noted that Jessica seemed frustrated by her inability to express herself. Prior to her injury, she could name over 30 objects (toys, pets, favorite cartoon characters) and was beginning to put two word sentences together (Momma bye-bye, Daddy home).
AAC interventions included the introduction of a BIGmack®, a single-message speech generating device (SGD) that enabled the staff and family members to record a message that Jessica could then “speak” during her daily activities(e.g., “more”, “bye-bye”, “turn page”). Because the BIGmack® is a colorful, large and easy to access SGD, Jessica was able to “press the button” despite her upper extremity spasticity and significant visual field cut. Within a month, Jessica had progressed to using a MACAW by Zygo®, an SGD with eight-location overlay that staff programmed with words she had used prior to her injury (e.g., mommy, daddy, more, bottle, book, bye-bye). Staff also designed additional overlays to encourage her language development by providing vocabulary that enabled her to construct two-word combinations (e.g., “more crackers”). Jessica began to express herself at a developmentally appropriate level, but she had residual memory deficits that required cuing and support from her communication partners. For example, initially, she did not recall how to use her AAC system from session to session so staff needed to reintroduce it each time. However, after several months, Jessica began to “search” for her SGD to communicate. Jessica, like many children with TBI at this level, was able to learn procedures and strategies with repetition and support (Ylvisaker and Feeney, 1998).
2.3. Level II and Level I. AAC Goals: Support transitions, recommend AAC strategies and technologies for use at home and in the community
As pediatric patients transition from Level II (responsive to environment) to Level I (oriented to self and surroundings), they often move from an acute rehabilitation facility to an outpatient setting, home or a care facility. Thus, before discharge, AAC teams will conduct a formal AAC assessment and provide long-term recommendations for AAC strategies and technologies that can enable children to be integrated successfully back into community environments. Table 1 illustrates the types of AAC technologies and strategies employed at Levels II and I, as described below.
For children who continue to use AAC and AT when they return to their communities, the rehabilitation team identifies a long-term communication advocate. This person, often a family member, becomes actively involved in AAC training and collaborates with rehabilitation staff to prepare the child’s educational staff, extended family and other caregivers (Fager, 2003). Having a link between the rehabilitation team and community professionals is essential because most teachers and community-based clinicians have limited experience working with children with TBI and may need support to manage the cognitive and physical deficits often associated with TBI. For example, McKenzie, a 12 year-old with a severe TBI secondary to a car accident, was quadriplegic with severe spasticity and no upper extremity control. She also had cortical blindness and significant communication and cognitive impairments. As she recovered, McKenzie used a variety of AAC systems (e.g., thumbs up/down for “yes” “no”, two BIGmacks® to communicate choices, and a scanning Cheap Talk by Enabling Devices with four messages to participate in structured activities). Prior to discharge, the rehabilitation team conducted a formal SGD evaluation and recommended the Vmax by DynaVox Mayer-Johnson, a voice output device. McKenzie was able to access the device via a head switch mounted to the side of the head rest on her wheelchair. Using auditory scanning, she could create and retrieve messages. Because she was literate prior to her injury and could still spell, the staff set up her device to include an alphabet page as well as several pages with pre-programmed messages containing basic/urgent care needs, jokes and social comments. Family and friends participated in her rehabilitation and learned to use tactile and verbal prompts to help her participate in conversational exchanges. Due to her residual cognitive deficits, however, McKenzie had difficulty initiating conversations and remembering where pre-stored messages were in her device. When prompted, she would respond and initiate questions and could engage in conversations over multiple turns. Over time, she began to participate in meaningful, social interactions, often spelling out two-three word novel phrases using her alphabet page
While her parents were renovating their home to handle her wheelchair, McKenzie transitioned to a regional care facility that specialized in working with young people with TBI. The acute rehabilitation team identified McKenzie’s aunt as her AAC advocate because she had participated actively in earlier phases of McKenzie’s recovery, was proficient with the maintenance (charging, set-up and basic trouble-shooting) of the Vmax and could customize and program new messages into the system. The care facility staff met with McKenzie’s aunt weekly so they could learn how to support McKenzie’s use of the SGD. Specific training objectives included maintenance and basic trouble-shooting, set up, switch-placement and how to program new messages to use in specific and motivating activities. Staff learned how to modify the placement of her switch when McKenzie became fatigued or her spasticity increased. Additionally, McKenzie’s school staff (special education coordinator, speech-language pathologist, occupational therapist, and one of her regular classroom teachers) visited McKenzie at the rehabilitation and the care facilities to help prepare for her return home and learned how to support her in school, given her physical and cognitive limitations.
2.4. AAC themes in TBI
When working with pediatric patients with TBI, three AAC “themes” emerge.
1. Recovery from TBI is dynamic and takes place over time. In early stages of recovery, most children with TBI have physical, speech, language and cognitive deficits that affect their communication skills. Depending on the nature and severity of their injuries, however, most recover functional speech, although some will have life-long residual speech, language and communication deficits. Acute rehabilitation teams can employ AAC interventions to support communication, as well as monitor the child’s changing communication abilities and needs over time.
2. The cognitive-linguistic challenges associated with TBI make AAC interventions particularly challenging for rehabilitation staff, as well as for families, friends and school personnel. Because of the complex nature of the residual disabilities caused by TBI, collaborations among rehabilitation specialists, family members and community-based professionals are essential. Some children with TBI require AAC supports throughout their lives. Family members, friends and school personnel rarely know how to manage their severe memory, attention and/or initiation deficits that can affect long-term communication outcomes.
3. There is a need to plan carefully for transitions. Children with TBI will undergo many transitions. While research describing these transitions in children is not available, reports of the experiences of adults with TBI describe multiple transitions over time. Penna et al. (2010) noted that adults with TBI undergo a significant number of residence transitions particularly in the first year following injury and Fager (2003) described the different transitions (acute care hospital, outpatient rehabilitation, skilled nursing facility, home with adult daycare services, and eventually assisted living) for an adult with severe TBI experienced over a decade, documenting significant changes in his cognitive abilities, as well as his communication partners and support staff. Children with TBI are likely to experience even more transitions over their lifetimes.
3. Pediatric SCI and AAC
Pediatric patients with SCI often have intact cognitive skills and severe physical disabilities that can interfere with their ability to speak. In addition, they often have significant medical complications and may be left with severe motor impairments that make it difficult, if not impossible, for them to write, access a computer or participate in the gaming, online and remote social networking activities embraced by today’s youth (e.g., texting, email). A subgroup may also present with a concomitant TBI sustained as a result of the fall, car accident or other traumatic event that has changed their lives. For them, AAC treatment must reflect guidelines that take into account both SCI and TBI.
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As with TBI, the growth and development inherent in childhood and adolescence and the unique manifestations and complications associated with SCI require that management be both developmentally based and directed to the individual’s special needs (Vogel, 1997). Initially, AAC interventions typically focus on ensuring face-to-face communication when speech is unavailable or very difficult; over the long term, however, enabling children to write and engage in educational, recreational and pre-vocational activities using computers and other mainstream technologies becomes the focus.
3.1. AAC Assessment and Intervention
The ASIA standard neurological classification of SCI from the American Spinal Injury Association and International Medical Society of Paraplegia (2000) is a tool that rehabilitation teams frequently use to assess patients with SCI because it identifies the level of injury and associated deficits at each level. This can help guide the rehabilitation team’s clinical decision-making process for AAC interventions. As shown in Table 2, children with high tetraplegia (C1-C4 SCI) have limited head control and are often ventilator dependent. They often require eye, head, and/or voice control of AAC devices and mainstream technologies to communicate. While switch scanning is an option for some, it requires higher-level cognitive abilities, endurance, and vigilance and may be inappropriate for very young children and those who are medically fragile (Wagner and Jackson, 2006; McCarthy et al., 2006; Peterson, Reichle, and Johnston, 2000; Horn and Jones, 1996). Children with low tetraplegia (C5-T1 SCI) demonstrate limited proximal and distal upper extremity control. If fitted with splints that support their arm and hand, some are able to use specially adapted mouse options (e.g., joystick mouse, switch-adapted mouse, trackball mouse), large button or light touch keyboards and switches to control technology. These children are also candidates for head tracking and voice control of AAC devices due to the fatigue and physical effort involved in using their upper extremities. For example, a multi-modal access method to AAC technology and computers may include voice control to dictate text, hand control of the cursor with an adaptive mouse to perform other computer functions (e.g., open programs), and an adaptive keyboard to correct errors that are generated while dictating text. This multi-modal approach can be more efficient and less frustrating than using voice control alone for these children. Table 2 provides examples of appropriate access options to AAC and mainstream technologies.
3.2. Supporting face-to-face communication
For children with high tetraplegia, being dependent on mechanical ventilation is frightening especially when they are unable to tolerate a talking valve (Padman, Alexander, Thorogood, and Porth, 2003). Thus, providing these children with a way to communicate is essential to their recovery and sense of well-being. As children with lower levels of injury are weaned from a ventilator, they may experience reduced respiratory control and be unable to speak (Britton and Baarslag-Benson, 2007). Medical specialists can provide access to AAC strategies and technologies, which enable these children to communicate their wants, needs and feelings throughout the day. This allows them to interact with direct care staff, participate in their rehabilitation process, and maintain relationships with family and friends.
Pediatric rehabilitation teams may use a range of AAC strategies and technologies to support face-to-face communication in children with SCI. Some examples include low tech communication boards used with eye gaze or eye pointing, partner-dependent scanning, an electro larynx with intra-oral adaptor, or laser light pointing to a target message or letter on a communication board (Britton and Baarslag-Benson, 2007; Beukelman and Mirenda, 2005). Introducing AAC and AT technologies early in the recovery process, particularly for children who demonstrate high tetraplegia, will also begin to familiarize them with approaches they may need to rely on extensively throughout their lives, even after speech returns.
For example, Jared, a 17-year-old high school senior, sustained a SCI in a skiing accident at the C2 level. In addition to his injuries, he developed pneumonia and a severe coccyx wound during his hospitalization, which lengthened his hospital stay. He was unable to tolerate a one-way speaking valve due to the severity of his pneumonia and decreased oxygenation during valve trials. Although Jared had minimal head movement, he was able to control an AccuPointâ„¢ head tracker to access his home laptop computer and spell out messages he could then speak aloud using speech synthesis software. He used his AAC system to indicate his medical needs to caregivers and later reported that having the ability to communicate helped alleviate some of the anxiety he experienced due to his condition and extended hospitalization. After Jared recovered the ability to use a talking valve, his work with the AccuPointâ„¢ focused on computer access to meet written and social communication needs. Once his wound had healed, he was able to return home 11 months later. At that time, all of his classmates had graduated. Using the AccuPointâ„¢, Jared was able to complete his GED at home and enrolled in online classes at the local community college.
3.3. Supporting written communication and education
At the time of their injury, some pediatric patients with SCI are pre-literate, others are developing literacy skills, and others have highly developed literacy skills. However, most children with tetraplegia will require the use of assistive technologies to support written communication because their injuries preclude them from using a pencil and/or typing on a traditional computer keyboard. In a report describing the educational participation of children with spinal cord injury, 89% of the children with tetraplegia relied on AAC to support written communication needs (Dudgeon, Massagli, and Ross, 1996).
For example, Max, a 6 year-old boy who suffered a C6 SCI after an All Terrain Vehicle accident, was reading age-appropriate sight words and developing his ability to write single words prior to his injury. After the initial recovery period, formal testing revealed that Max had no residual cognitive or language impairments. However, he faced significant barriers not only to his continued development of age-appropriate reading and writing skills, but also to his ability to learn and do math, social studies, science, play games, use a cell phone, etc. Due to his tetraplegia, he needed ways to access text and write, calculate, draw and so on. Max learned to access a computer using a large button keyboard, joystick mouse, and adaptive hand-typers (cuffs with an attached stylus that fit on the ulnar side of the hand and allow the user to press the keys of a keyboard) to support writing activities and computer access. During rehabilitation, he was able to continue with his schoolwork by developing the skills to use the technology and keep up with his classmates. He returned home during the summer and participated in an intense home tutoring program. By the fall, he was able to join his classmates and was able to perform at grade level in all classes. Essential to Max’s future educational success and development, as well as his future employment, may well depend on his ability to write, calculate and perhaps even draw using a variety of assistive technologies that support communication.
3.4. Support social participation and pre-vocational activities
Access to assistive and mainstream technologies not only facilitates participation in education, but also has implications for future employment as these children transition into adulthood. Assistive and mainstream technologies are now available at modest cost that can help individuals with SCI to compensate for functional limitations, overcome barriers to employability, enhance technical capacities and computer utilization, and improve ability to compete for gainful employment In addition, these technologies also provide access to life-long learning, recreational activities and social networking activities. Specifically, computers are described as “great equalizers” for individuals with SCI to engage in employment opportunities and distant communication (McKinley, TewksBury, Sitter, Reed, and Floyd, 2004).
Social participation in the current technological age includes more than face-to-face communication. Social participation has expanded with the popularity of social networking sites (e.g., Facebook â„¢and MySpaceâ„¢), video web-based communication (e.g., Skypeâ„¢) and instant communication and messaging (e.g., Twitterâ„¢). Advances in the field of AAC have allowed individuals with the most severe injuries access computer technologies to engage in these social communication activities. For example, Crystal was a 10-year-old who sustained a C1 SCI due to a fall. Crystal’s injury left her with no head/neck control and her only consistent access method to computerized technology was through eye tracking. With an ERICA eye gaze system from DynaVox Mayer-Johnson, Crystal quickly became independent with computer access. She emailed and texted her friends and family daily, communicated via her Facebookâ„¢ account, and engaged in online gaming programs with her friends and siblings. This technology allowed her to begin to communicate again with her school friends while she was still undergoing acute rehabilitation. Maintaining these social networks is an essential component to emotional adjustment children with SCI go through after sustaining a severe injury (Dudgeon, Massagli, and Ross, 1997). Additionally, Crystal’s friends began to understand that while her impairments were severe, she was essentially the same person with the same interests, humor, goals, and expectations as before her injury.
3.5. AT/AAC themes in SCI
When working with pediatric patients with SCI, three AAC “themes” emerge.
1. For those with high tetraplegia, AAC may facilitate face-to-face as well as distant and written communication needs, depending on the developmental level of the child. Introducing AAC technology early, when face-to-face communication support is needed, helps the child become familiar with the technology they will need to rely on after natural speech has recovered.
2. Return to an educational environment is a primary goal with many children with tetraplegia returning to school within an average of 62 days post discharge (Sandford, Falk-Palec, and Spears, 1999). Development of written communication skills is an essential component to successful educational completion and future vocational opportunities (McKinley, Tewksbury, Sitter, Reed, and Floyd, 2004).
3. Introduction to methods of written and electronic communication provides an opportunity for patients with SCI to engage in social networks through email, texting, and social networking sites. As these children with severe physical disabilities face a life time of potential medical complications (Capoor and Stein, 2005), the ability to maintain and develop new social connections via electronic media allow them to stay connected during times when their medical conditions require them to be house or hospital-bound.
Communication is essential for continued development of cognitive, language, social, and emotional skills. Children with TBI and SCI have physical and/or cognitive-language deficits that interfere with typical communication abilities. Their communication needs are supported through AAC strategies and technologies. A myriad of technology options are available that not only support face-to-face interactions, but equally important distant social networking and educational activities. AAC interventions in the medical setting that not only support communication of basic medical needs, but also facilitate engagement in social, educational, and pre-vocational activities will result in successful transition to home, school and community environments for these children.
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