Multimodal AAC for Individuals with Down Syndrome

Krista M. Wilkinson, Lizbeth H. Finestack, Krista M. Wilkinson, Lizbeth H. Finestack

• Publisher: Brookes Publishing
• Year: 2020
• Print ISBN: 9781681254128
• eBook ISBN: 9781681254135
• Topic: Medicina
• Subtopic: Audiología y patología del habla

Many people with Down syndrome—one of the most common genetically-linked developmental disabilities—experience difficulty developing spoken and written communication skills. In this groundbreaking book, discover how augmentative and alternative communication (AAC) can enhance communicative competence and improve outcomes for people with Down syndrome across the lifespan. The newest volume in Beukelman and Light's respected Augmentative and Alternative Communication Series, this book fully explores how interdisciplinary, multimodal AAC strategies can promote speech, language, and literacy success across many contexts, including homes, schools, communities, health care settings, and the workplace.

Bringing together an interdisciplinary group of more than 25 experts on AAC and Down syndrome, this is a must-have resource for speech-language pathologists, special educators, and AAC specialists—and a key supplementary text for courses on AAC and developmental disabilities. Use the research-based guidance in this book to help people with Down syndrome develop stronger communication skills and participate meaningfully in their schools and communities, from early childhood through adulthood.

READERS WILL LEARN HOW TO:

• Skillfully pair unaided AAC supports (gestures and manual signs) with aided AAC (technology and other supports external to the body)
• Enrich young children's communication and language development with AAC
• Use AAC to boost older children's vocabulary, grammatical language, and narrative language skills
• Enhance reading instruction using AAC technology
• Supplement speech and improve speech intelligibility with carefully chosen interventions and visual communication aids
• Engage whole families as collaborative partners to integrate AAC supports into everyday life
• Address young adults' communication needs, as they evolve to include more varied communication partners, more complex topics, and new contexts
• Assess cognitive and social functioning in adolescents and adults who use AAC
• Support communication and self-advocacy across health care settings with AAC strategies

II

Considerations for Communication Supports Across the Life Span

5

Integration of AAC Into Early Language Intervention With Children With Down Syndrome

MaryAnn Romski, Rose A. Sevcik, Andrea Barton-Hulsey, Evelyn L. Fisher, Marika King, Phebe Albert, Gal Kaldes, Casy Walters, and Candace Evans

Case Vignette 1: Jamie

We first met Jamie and his parents when he was 23 months old and receiving early intervention services and supports. His receptive and expressive language (age equivalent) raw scores on the Vineland Adaptive Behavior Scales were 21 (2 years, 2 months) and 6 (10 months), respectively. He had been working with a speech-language pathologist and had a few manual signs, but they were not readily understandable to his communication partners. He received an augmentative and alternative communication (AAC) device with speech output and multiple overlays and immediately began using it to spontaneously communicate at home and at child care. Jamie used the device to make comments and requests and to answer questions. He quickly began to use spoken word approximations for the symbols he had learned, and his expressive vocabulary expanded rapidly. Within the year, he had a spoken vocabulary of more than 50 words and began to use the AAC device to combine symbols and words into telegraphic utterances. He relied less on the device for communication as he developed and advanced into preschool, and he used it as a support for advancing his expressive language skills. Spoken language became his primary means of communication by the time he began kindergarten.

The case vignette of Jamie, a young child with Down syndrome (DS), and his early intervention experiences with AAC technology illustrates how AAC can be integrated into early communication and language intervention services and supports. Since 1980, the field of AAC has evolved as an area of clinical practice. Initially, AAC was only considered as an alternative to spoken communication after all other interventions had failed (Miller & Chapman, 1985). Today, AAC is a life span intervention approach (Beukelman & Light, 2020; Romski & Sevcik, 2018). With respect to early intervention, AAC interventions have advanced substantially from being considered a last intervention resort to being a first line of defense for young children at the beginning stages of communication development (Romski, Sevcik, Barton-Hulsey, & Whitmore, 2015).

This chapter provides an overview of the key literature on early communication and language in children with DS in service of a discussion about the important roles AAC can play in enriching communication and language development, including speech, for young children with DS. This chapter uses early intervention as a foundation, describes the skills and challenges young children with DS bring to the task of learning communication and language skills during the early years, and discusses what is known about early communication and language development. These sections provide the foundation on which the roles AAC may play in facilitating communication and language development of children with DS are described, reviewed, and emphasized.

EARLY INTERVENTION FRAMEWORK

Given the genetic basis of DS, it is identified at or before birth. Thus, early intervention services and supports begin at birth for children with DS and their families and provide the foundation for their development. Early intervention is the provision of services and supports to very young children and their families when the child has an identified disability or is at risk for one (Odom, Hanson, Blackman, & Kaul, 2003). The purpose of early intervention is to facilitate the growth of the child in the family in all developmental areas, including communication and language. Intervention as early as possible in the child’s life has the potential to maximize the child’s inclusion and productivity in society over time as well as reduce any stress the family may face (Guralnick, 2000, 2008). The Individuals with Disabilities Education Improvement Act (IDEA) of 2004 (PL 108-446), Part C, provides U.S. mandated early intervention services from birth to 3 years of age for children who are at risk for delayed development or have a developmental disability. Services and supports are typically provided in the child’s home in conjunction with the family, although they may also be provided in a clinical setting (the importance of the family is discussed in detail in Chapter 9). Services and supports may include identification and assessment of developmental concerns as well as interventions to address specific areas of communication and language. Young children with DS may present with various challenges during the first years of life that can influence or interface with the development of communication and language and affect the goals of early intervention services. These early intervention services and supports provide a foundation on which developmental and educational goals are built.

DEVELOPMENTAL SKILLS AND CHALLENGES OF YOUNG CHILDREN WITH DOWN SYNDROME

Co-occurring medical conditions, anomalies in anatomical characteristics, and deficits in visual, auditory, and motor skills are developmental concerns that may create additional challenges during early communication and language intervention. These challenges may affect how early communication development proceeds for the child with DS.

Medical Conditions and Anatomical Characteristics

Young children with DS have high rates of medical comorbidities that may affect their communication and language development (see Chapter 10 for specific discussions of other common medical conditions across the life span and their AAC implications). These comorbidities may affect the development of speech and language through direct impact on neurological development or indirectly by diverting family resources (e.g., time, energy, financial resources) away from speech and language services to address medical needs. Congenital heart disease, pulmonary disorders, and seizures are medical conditions with known links to brain development.

Approximately one half of newborns with DS exhibit congenital heart disease, and one quarter have more than one cardiovascular anomaly (Dennis, Archer, Ellis, & Marder, 2010; Freeman et al., 1998; Irving & Chaudhari, 2012). A 2012 population-based study of 821 individuals with DS indicated that the most common types of congenital heart disease in children with DS are complete atrioventricular septal defect (37%), ventricular septal defect (31%), and atrial septal defect (15%) (Irving & Chaudhari, 2012). A majority (72%) of those children with congenital heart disease required surgical intervention in the first year of life. The detrimental impact of congenital heart disease is likely driven by chronic hypoxia due to poor perfusion of blood to the brain and/or increased risk of white matter injury or stroke during cardiovascular surgery in infancy (Cassidy et al., 2018; Mebius, Kooi, Bilardo, & Bos, 2017). Research on otherwise typically developing children with this condition documents increased risk of poorer outcomes across many areas of cognitive, emotional, and behavioral functioning (Cassidy et al., 2018). Extended hospitalization for congenital heart disease may negatively reduce language input generally, increase the number of communication partners such as health care providers, and present the additional challenge of the providers’ lack of responsivity.

Research on the relationship between congenital heart disease and neurodevelopmental outcomes in DS is limited but suggests that it is associated with more severe delays in toddlerhood, which may improve over time (Alsaied et al., 2016; Visootsak et al., 2011). Visootsak, Hess, Bakeman, and Adamson (2013) reported that young children with DS (mean age, 31.2 months) with congenital heart disease had significantly lower scores on the Communication Development Inventory word count and symbol-infused joint engagement. This finding suggests that congenital heart disease can delay the development of words beyond that typically seen in children with DS.

Rates of pulmonary disorders, including disorders of pulmonary vasculature, parenchymal lung disease, upper and lower airway abnormalities, and chronic aspiration, are also much higher among children with DS compared with the general population. In a 2004 survey of 208 parents, 60% of children with DS were reported to have at least one pulmonary disorder, most commonly obstructive sleep apnea and asthma (Thomas et al., 2011). The high incidence of these disorders again raises concern for the potential impact of chronic or intermittent hypoxia on brain development in children with DS. Obstructive sleep apnea and other sleep difficulties related to sleep onset or maintenance are known to affect cognition by depriving affected children of restorative sleep, leading to deficits in neuropsychological functioning, especially in the areas of attention, memory, and learning (Breslin et al., 2014; da Silva Gusmão Cardoso, Pompéia, & Miranda, 2018; Song, Tolisano, Cable, & Camacho, 2016).

Children with DS are also at heightened risk for seizures, with 5%–13% having childhood epilepsy (Arya, Kabra, & Gulati, 2011; Lott, 2012; Lujić, Bosnjak, Delin, Duranović, & Krakar, 2011). Infantile spasms, an especially harmful type of seizure that emerges in the first year of life, affect approximately 40% of children with DS (Lott, 2012). Infantile spasms are strongly associated with poorer neurodevelopmental outcomes due to their occurrence in children with certain genetic and congenital disorders and the impact of early seizures on brain development. Children with DS and infantile spasms, however, are more likely to achieve adequate seizure control on antiepileptic medications than children with infantile spasms of other etiologies (Arya et al., 2011). Better seizure control is associated with improved outcomes among children with infantile spasms.

Anatomically, young children with DS tend to have a high and narrow arched palate, enlarged tonsils and adenoids, and a small mouth and jaw relative to their tongue size (Abbeduto, Warren, & Conners, 2007; Beeghly, Weiss-Perry, & Cicchetti, 1990). These physical characteristics, combined with low muscle tone, may affect the success that children with DS have in producing precise speech sounds, which often leads to difficulties in speech intelligibility (Abbeduto et al., 2007; Kumin, 1994; see Kent & Vorperian, Chapter 3, for detailed examination of speech intelligibility and AAC in DS).

Visual and Auditory Sensory Skills

In addition to the medical conditions that affect brain development, learning and development is often affected by visual and auditory sensory impairments in children with DS. In terms of ophthalmologic disorders, newborns with DS have heightened rates of strabismus, nystagmus, and cataracts (Ostermaier, 2019) Strabismus is any misalignment of the eyes, whereas nystagmus is a rapid, involuntary, shaking “to and fro” movement of the eyes. Cataracts cause cloudiness or opacity of the natural lens of the eye, which is normally clear. Approximately 50% of preschoolers with DS display refractive errors requiring eyeglasses for correction (Bull, 2011). These visual challenges can affect the use of visual AAC systems, as discussed in Laubscher and Wilkinson (Chapter 4).

In the general population, early hearing loss impedes speech and language development by limiting a child’s access to spoken language (Marcell & Cohen, 1992). Hearing loss is a pervasive problem in children with DS, with prevalence estimates ranging from 38% to 78% (Grieco, Pulsifer, Seligsohn, Skotko, & Schwartz, 2015; Roizen & Patterson, 2003). Overall, hearing loss is a high-priority concern in this population because of its detrimental impact on speech and language development and because most types of hearing loss exhibited by children with DS are treatable. Nightengale, Yoon, Wolter-Warmerdam, Daniels, and Hickey (2017) found that 33% of young children with DS had conductive hearing loss, and 30% had sensorineural hearing loss. In a 2018 study of 1088 individuals with DS referred for audiological evaluation, 11% demonstrated nor...

Table of contents

• Cover
• Title Page
• Copyright
• Contents
• Series Preface
• Series Editors
• About the Editors
• About the Contributors
• Acknowledgments
• Section I: Introduction to Down Syndrome and Augmentative and Alternative Communication
• Section II: Considerations for Communication Supports Across the Life Span
• Section III: Supporting Participation Across Valued Contexts
• Index
• Back Cover