Supporting communication in a child with Down Syndrome using augmentative and alternative communication

The greatest gift we can give a child is help in learning to communicate and connect with the world by L. Marsh, E. Drummond and V. Mc Manus, Catherine McAuley School of Nursing and Midwifery, University College Cork. Email correspondence to l.marsh@ucc.ie

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Introduction

There can be little doubt that the use of effective communication has major implications on how individuals can exercise choice and control over their lives, gain independence and social inclusion leading to real improvements in quality of life (Thurman et al. 2003). The core meaning of the word communicate is ‘to place in common’, and language is said to communicate when the individual speaking and the individual listening come to understand and interpret correctly what has been said (Cole and Cole 1996). Kaiser et al.(2001, p.144) define communication as ‘the exchange of shared meanings using conventional, mutually recognized verbal and nonverbal forms’ and Kumin (1998) further suggests that communication involves not only speech but also facial expressions, smiles, gestures, pointing, high-fives and alternative aided or unaided communication systems.

By the age of three and a half most typically developing children have mastered the skills of communication, as they have participated in everyday family life and community activities (Cole and Cole 1996). They also assert that if children are to master language, not only do they have to experience and participate in family and community living, but they must also hear or see language as they grow (Cole and Cole 1996). Equally the development of communication in children with Down Syndrome is comparable to typically developing children with spoken language, tending to emerge between two and a half and four years of age (Buckley 1993; Watson 1996). The production of speech and language, however, presents many challenges for children with Down Syndrome and many may not experience the levels of fluency, complexity and skill in keeping with their peers (Kaiser et al. 2001). There is wide acknowledgement in the literature that children with Down Syndrome experience significant delays and difficulties with learning to talk and are at a higher risk of communication difficulties, thus leading to problems in the production of speech and language even into later life (Cockerill 2002; Buckley 1993; Lorenz 2006).

Some reasons cited as attributing to these communication difficulties are that as many as 75% of young children with Down Syndrome have mild hearing problems attributed to the higher than average incidence of ear infections (specifically otitis media) (Miller and Rosin 1998). This commonly recurring chronic health condition is identified as leading to fluctuations in auditory processes resulting in short telegraphic speech often difficult for others to understand (Buckley 1993; Bosch 2003). Additionally children with Down Syndrome have small oral cavities and large coarse protruding tongues, so much of their speech production is Manolson 1992 often found to be unintelligible and indistinct (Buckley and Bird 2001). This situation further compounded by poor listening skills (auditory memory) and visual problems (Cockerill 2002; Buckley 1993). These combined difficulties create significant barriers to effective communication and language development and leave much of the interpretative work to parents who can best interpret their children’s needs (Wishart 2001). Nonetheless, some children will require Augmentative and Alternative Communication (AAC) to be implemented to ensure they learn to use speech and language effectively for functional communication (Duker et al. 2002; Cockerill 2002).

Total or inclusive communication

The introduction of total or inclusive communication approaches are increasingly recognised as best practice (Bradshaw 2000; Jones 2000) and can be described as an ‘approach that seeks to create a supportive and effective communication environment, using every available means of communication to understand and to be understood’ (Thurman et al. 2003). It is an approach by which a variety of different methods can be used to convey meaning including speech to teach language, touch, body clues, natural gestures, real objects (objects of reference) and formal signs to support communication (Jones 2000). Linder (1993) advocates the use of play as it is the most natural activity for the child and encourages communication and language development as well as cognition and social-emotional development. When analysing the child’s communication, videotaping the play session is considered an integral aspect of the assessment as it is a useful mechanism for parents and other professionals to discuss if the recording was wholly representative of the child’s current levels of communication (Linder 1993).

This natural play environment further provides an important opportunity for the child to learn about the world in a fun and relaxed setting (Pepper and Weitzman 2004). Thus AAC is not ‘a one size fits all’, and is largely dependent on the individual child and where s/he is at in relation to their own development. This further supports a child-centred approach to communication and essentially any intervention will be determined by the child themselves. The approach shifts and adapts as the child’s communication skills improve. Other factors such as the child’s age, level of ability, current communication skills and the environment have to be considered prior to the introduction of AAC. Indeed, children with Down Syndrome who utilise AAC are more likely to interact with their environment when they can understand and be understood, and they become more motivated to learn (Wishart 2001).

In essence, by adopting an integrative approach to AAC, children learn to communicate effectively by every means possible as they are active participants in their environment. This leads to an enhanced knowledge and understanding for the child of the world around them. Such understanding supports the inclusion and integration of children with Down Syndrome in their community, enabling them to have their needs met (Kumin 1998; Buckley 1993). Indeed, Cockerill (2002) identifies signing as a positive influence on the development of children’s speech and language development. Moreover Chapman (1997, pg.311) suggests that most of these children drop the signs ‘as intelligibility, number of communicative partners, and vocabulary size increase’. Hence, the practical application of communication interventions has shown that provided the right supports are afforded to children with Down Syndrome, they can influence their immediate environment, thus leading to real improvements in life opportunities and quality of life (Foreman and Crews 1998).

Augmentative and alternative communication (aac)

The last thirty years have witnessed an increase in the use of augmentative and alternative communication techniques (AAC) which have been acknowledged as having a major role in the development of ‘effective social behaviour’. AAC includes the use of unaided systems such as gestures and signing and aided systems ranging from picture boards to computer technology (Romski and Sevcik 2005), leading to more effective speech, language and cognitive skills (Cockerill 2002; Buckley 1993; Foreman and Crews 1998). There have been many sign systems developed with particular interest in people with intellectual disabilities in the last two decades both, in the United Kingdom and in Ireland. One such system based on British Sign language is Margaret Walker’s Makaton Vocabulary developed in the early 1970s (Grove and Walker 1990).
Makaton vocabulary is one of the most extensively used systems of augmentative communication in use in the United Kingdom. It ‘provides an approach to the teaching of communication and language skills, using manual signs and/or graphic symbols, accompanied by speech’ (Grove and Walker 1990). The system ‘relies heavily on natural gestures, body language and facial expression… and appears to enable children and adults to master the skills quickly’ (Foreman and Crews 1988).

From an Irish perspective LAMH (Language Augmentation for the Mentally Handicapped) (Clarke et al. 1991) (‘lamh’ is the Irish word for hand; pronounced lawv) was adopted nationally in intellectual disability services in 1982, and further revised in 2002 (Le Prevost 1995). LAMH is a sign system of approximately 600 signs that can be combined to form sentences, with many signs looking like the objects they represent. It emphasises gestures which are incorporated in the development of a vocabulary and appropriate facial expressions with signs and speech must be adopted in order to convey meaning to what is being said. It is based on the premise of ‘sign and say’ and is not used to replace language, but to support and augment communication (Clibbins et al 2002).

In the context of children with Down Syndrome specifically, sign language has been identified as a good communication tool (Duker et al 2002; Donovan 1998) as these children demonstrate strengths in visual processing and are excellent at using facial expressions, gestures, and vocalizations (Duker et al. 2002; Foreman and Crews 1998). Even though speech and language production often develops more slowly than receptive language, improvements in communication can and do occur (O’Toole and Chiat 2006). Notably, children of all ages find it more difficult to use miniatures or substitute objects as symbols and demonstrate greater understanding of the ‘sign and say’ approach reflective of LAMH and Makaton (Grove and Walker 1990; Clarke et al. 1991. In conclusion, sign language involving natural gestures and signs are easier for children with Down Syndrome to use than communication systems based solely on objects (O’Toole and Chiat 2006). The following case study demonstrates how AAC was used to support Sean’s communication.

Profile of Seán

Seán is a three and a half year old child with Down Syndrome who presents with a moderate intellectual disability (35-49) as defined by the ICD-10 (WHO 1996). He lives at home with his parents and two older sisters and is a happy and alert young child. His communication is mostly in the form of using gestures or ‘body language’; he has no clear spontaneous speech. When prompted by his parents he will engage in some sign language such as waving bye-bye or blowing kisses. His expressive skills are less explicit than his receptive skills, in that he understands much of what is being said and has the ability to get his needs and wants met. This he achieves through pointing to objects or by pulling his parent to items/activities. He understands simple instructions said in context such as ‘Seán, go and get your coat’, but cannot follow more complex requests such as ‘Seán, go and get your coat and put it on.’ Seán manages to communicate well even though he has very little spoken language and relies heavily on signs, gestures, cues and body language—all of which is characteristic of children with Down Syndrome (Cockerill 2002; Lorenz 2006).

Prior to the introduction of AAC, it is suggested that those supporting any communication intervention should adhere to the following five key principles:

  1. everyone has the capacity to communicate and has something to say,
  2. opportunities are key to communication,
  3. you have to be a good listener,
  4. always assume that individuals can understand everything you say, and
  5. your communication styles need to be adjusted as necessary to suit the situation (Mirenda 1999).
Enhancing communication

Thus, prior to the planning and implementation of any communication intervention it is essential that a holistic assessment with the child and their family be undertaken. The assessment is the first step in planning any communication intervention, with the second step identifying what it is the child needs to acquire, and finally that the needs are acquired in the immediate and not the distant future (Cunningham and Sloper 1985). This will assist in identifying the child’s current communication skills, thereby establishing a baseline from which other skills can be taught (Frost and Bondy 2002).

Methods of assessment
Detailed information about Seán and his environment was collected using the LAMH assessment checklist (Clarke et al. 1991) and the Interactive Communication and Play Checklist (Down Syndrome Trust 2001) (Table 1.0), as well as direct observations and information gleaned from Seán, his parents and staff. Informal observations of his physical, social and emotional health and well being during his regular routine and play sessions and formal assessments of his medical history and cognitive development were also reviewed.
The LAMH assessment checklist:

  • To establish a baseline of Seán’s current communication skills.
  • To identify if Seán requires AAC.
  • To identify if Seán can benefit from AAC.
  • To identify which kind of AAC Seán can use and learn.
  • To identify which system will meet his future needs.
The Interactive Communication and Play Checklist

This tool is completed by parents and it ‘provides a guide to the range of communicative functions that children use and to their ability to join in and initiate conversation’ (Buckley and Bird 2001).

TABLE 1.0—ASSESSMENT CHECKLIST

The information gleaned from the assessments showed that Seán vocalises to gain attention. He smiles at people who talk to him, but does not initiate contact with peers. Sean displays intentional communication strategies in that he points, gestures and uses ‘body language’ as well as displaying good imitation skills. He can request items/activities through pointing and will reject items/objects by throwing them on the floor. Seán will vocalise loudly when he is interested in an activity and he shows disapproval by moving away from an activity. He demonstrates a preference for his left hand. In partnership with Seán’s parents and the multidisciplinary team, it was determined that Seán would benefit from the immediate introduction of LAMH as a watchful waiting approach is no longer acceptable for any child who is identified as being at risk of communication difficulties (Cockerill 2002).

The introduction of AAC in this case resulted in Seán’s parents being asked to consider twenty signs which they considered to be important to learn, and from this list they were asked to identify six signs that Seán would benefit from. When choosing signs it is vital that they are interesting, motivating and functional, thus giving the child control over his environment. Initially Seán’s parents had requested signs for both mother and father, but as these signs are very similar they are not taught together. Seán’s preference for animal storybooks will facilitate the use of the sign for ‘book’ and ‘dog’. Repetition and re-reading the same story will encourage the use of these signs and can be built into numerous sing-along activities in the home and school environments (Donovan 1998).

Discussion

A growing body of evidence suggests that interventions with parents and children in the early years can be very valuable in terms of stimulating children’s intellectual, physical and social development (Ghate and Hazel 2002; Johnson et al. 2000). As parents are the first teachers of speech and language they must be central to any communication interventions, as the most important intervention takes place in the home (Kumin 1998). However, parents’ fears regarding the introduction of LAMH are that language production may be hindered or discouraged or that they would have difficulty learning the signs themselves. Therefore training in the use of LAMH is essential for parents, siblings and staff alike, as all those supporting AAC are required to more fluent than the child in signing (Kaiser et al. 2001). Signs must be used consistently with natural speech and any attempt that the child makes to sign has to be rewarded immediately (Cockerill 2002; Le Prevost 1995).

It is essential that any communication intervention is evaluated and that everyone is afforded the opportunity to discuss the child’s progress and address any concerns or worries which may arise. AAC has not only been acknowledged as an effective communication intervention, it is also clear that using this approach will augment existing natural speech whilst reinforcing the concepts of basic language development (Romski and Sevcik 2005; Grove and Walker 1990). Indeed, it is essential that all modalities of communication are promoted enabling individuals to communicate in everyday situations, whilst preparing them to communicate in unfamiliar situations, thus transferring knowledge and skills across a wide variety of settings (Foreman and Crews 1998).

Conclusion

The understanding from a comprehensive assessment highlighted both Seán’s strengths and weaknesses with communication and language development. If effective communication interventions are implemented early on in a child’s life, then better speech, language and cognitive abilities are evident thus enabling individuals to make choices, gain independence, exercise more control over life, ultimately enhancing quality of life for all (Buckley 1993; Thurman et al. 2005). The practical application of AAC for children with Down Syndrome has shown that if children can influence their immediate environment, life opportunities can be improved provided that the right supports are afforded these children, thus promoting optimal nursing supports for the child with Down Syndrome (Foreman and Crews 1998). This case study demonstrates the importance for all health professionals who support children with Down Syndrome to be knowledgeable of communication interventions that are available to these children.

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