Children with Down Syndrome: implications for adult-child interactions in inclusive settings.
In 1866, John Langdon Down described characteristics of a chromosomal disorder that since has been named Down syndrome (DS). The most common form of DS is Trisomy 21, a congenital condition marked by the addition of a third part to the 21st chromosome. With this extra genetic material comes the likelihood of physical and intellectual complications. Since Down's initial description of the characteristics, considerable research has been conducted on DS. Although a cure or prevention has not yet been found, research shows that the limitations associated with DS are not as uniformly extensive as once thought. While the exact upper developmental limits or the changes over the life span are not yet fully understood, intervention can help children with DS reach their full potential (Nadel, 1988; Wishart, 1988). Research that compares the development and learning of children with DS to that of children who are developing typically provides valuable information for planning and implementing intervention.
Although DS is a relatively common and well-known syndrome, misconceptions about it can lead to stereotyping (Wishart, 1988). Not only can this be disconcerting to parents, the children may be disadvantaged by lower expectations. Low expectations are apt to adversely affect the learning environment and are related to low performance (Kozma, 1986a; Spiker & Hopmann, 1997; Wishart, 1988).
Knowledge of DS characteristics and parents' response to them can inform the practice of other adults working with children who have DS. Because children with DS and other disabilities increasingly are included into child care and preschool settings where children who are developing typically also attend, this information is particularly important for adults working in inclusive environments.
Characteristics of Down Syndrome
Although children born with DS are more likely than typically developing children to possess certain characteristics, not all children will be affected similarly, nor will the degree of involvement be the same. In addition, certain characteristics, such as those related to language development, may become more obvious with age. Moreover, characteristics found in individuals with DS also may be found in individuals with other syndromes. It is not now known whether any characteristics are unique to DS (Kasari & Hodapp, 1996). Therefore, educators should not uniformly apply characteristics to all children with DS. Rather, the characteristics should be used as a means for understanding and supporting individual children with DS within the specific contexts of their physical and social environments (McCollum & Bair, 1994). Therefore, we must remember that considerable variation exists in the physical development, medical conditions, mental abilities, and behavior of individuals with DS. Children with DS, like all children, have unique personalities, strengths, and needs (Cicchetti & Beeghly, 1990a; Kasari & Hodapp, 1996; National Down Syndrome Congress, 1994; National Information Center for Children and Youth with Disabilities, 1994; Spiker & Hopmann, 1997).
Physical and Medical Characteristics
Common physical characteristics of children with DS include the distinctive appearance of their facial features, head shape, feet, and hands. These characteristics do not interfere with their development and learning, nor is there any connection between the number of distinctive features and mental ability (Kozma, 1986a).
However, hypotonia, or low muscle tone, which is present in many infants with DS, is likely to affect learning and development. Hypotonia tends to be present to some extent in all muscles of those afflicted, causing the muscles to feel flaccid and floppy. However, the degree of low tone varies among different children with DS and in different parts of the body in the same individual. Fortunately, hypotonia diminishes with age and early intervention can minimize its negative effects (Kozma, 1986a; McConnaughey, 1986).
Hypotonia affects the strength and movement of children with DS and often is accompanied by excessive joint flexibility, which reduces stability in the children's limbs. Consequently, many children with DS experience delays in the development of major motor skills. These delays can hinder their ability to explore and gain mastery over their environment. In addition, hypotonia can negatively affect other areas of development, including language and feeding skills (Fetters, 1996; Kozma, 1986a; McConnaughey, 1986).
In addition to the above physical differences, children with DS have a higher incidence of medical problems than children who are developing typically. Common conditions include cardiac defects, respiratory and intestinal problems, vision and hearing difficulties, hypothyroidism, vertebrae instability, umbilical hernia, and obesity. With early detection, however, most of these problems are treatable, and most individuals with DS lead healthy, full lives (Kozma, 1986b; Spiker & Hopmann, 1997).
While the medical conditions associated with DS are treatable, the mental retardation associated with the syndrome cannot be treated medically. Fortunately, psychoeducational methods of intervention, which involve working directly with the children and their caregivers within their physical and social environments, may minimize the effects of mental retardation (Spiker & Hopmann, 1997). Most children with DS score in the mild-to-moderate range of retardation, although some are normal or near normal (Kozma, 1986a; McConnaughey, 1986). Young children with DS tend to perform poorly on both motor and mental tests of early learning (Wishart, 1988). This is not surprising, given the motor skills required for successful performance on these tests. Thus, over-reliance on test scores must be avoided, particularly because it could lead to lowered expectations for the children. Although the size and structural complexity of the brains of children with DS are less than that of children developing typically, it is not known how this specifically affects their mental functioning (Kozma, 1986a). It is known that many children with DS have shorter attention spans, make slower progress, and are less motivated than peers developing typically (McConnaughey, 1986).
The Edinburgh Longitudinal Study of Early Learning in Infants and Young Children investigated object concept development in children with and without DS (Wishart, 1988). Object concept development is considered a primary achievement during infancy, as well as a prerequisite for language development (Spiker & Hopmann, 1997). Findings from this study showed that the children with DS, unlike their peers who were developing typically, had difficulty consolidating tasks they had recently learned into new developmental demands. When encouraged, however, the children were able to retrieve the necessary information as long as the new task was not too far removed from their current level of functioning.
When tasks were presented that were more than one step beyond their current ability levels, the children protested or tried to divert the examiner's attention away from the task. The children again participated when the task was adjusted one step closer to their current level of functioning. The findings from this study indicate that the exploratory and motivational styles of children with DS may be less than optimal for development (Spiker & Hopmann, 1997; Wishart, 1988). These findings also imply that the zone of proximal development (ZPD), Vygotsky's term for the area slightly beyond a child's current competence (Rogoff, 1990), may be narrower for children with DS than for children developing typically.
The expressive language of children with DS tends to be far below their mental age. These delays are thought to be related to factors such as intermittent hearing losses, auditory processing difficulties, oral-motor hypotonicity, and structural differences (Gibbs & Carswell, 1991; Mahoney, Glover, & Finger, 1981).
Not only is the speech of many children with DS delayed, it is often unintelligible. The errors they produce are inconsistent and somewhat resistant to therapy. Although children may have difficulty with spontaneous speech, they tend to be able to imitate words correctly. The difficulties are thought to be related to tongue size, low muscle tone, chronic upper respiratory conditions, and frequent middle ear infections. Consequently, some children with DS may rely more on visual attention than on auditory attention (Dodd, McCormack, & Woodyatt, 1994). Hence, speech and language therapy, as well as total communication (the simultaneous presentation of manual signs and speech), is often recommended for children with DS.
The varying presence of the above characteristics contributes to the behavior of children with DS. For example, many infants with DS, particularly those with more involved cognitive delays, show muted and delayed facial expressions. This characteristic decreases with age, however. In fact, after infancy, many children with DS show similar or greater facial expressiveness than children developing typically. The quality of facial expressions in children with DS may make it difficult for adults to read their cues accurately (Kasari & Hodapp, 1996; Kasari, Mundy, Yimiya, & Sigman, 1990). When adults misread children's cues, they may become less involved and provide fewer opportunities for interactions. Or, they may increase their involvement in a manner that may be intrusive or that the child might find overstimulating (Cicchetti & Beeghly, 1990b). Thus, the child's behavior is likely to influence, as well as be influenced by, interactions with adults (Kasari & Hodapp, 1996).
Research shows that children with DS interact with their mothers differently than do peers of the same mental age who are developing typically. Infants with DS have been found to take a less active role and use more meaningless vocalizations than do children who are developing typically (Mahoney & Robenalt, 1986). Additional differences have been found in attention skills, nonverbal requests for objects, and exploratory skills of children with DS (Landry & Chapieski, 1989). In addition, many children with DS have higher arousal thresholds than children developing typically. Consequently, they may take longer to react to stimuli, and longer to calm down once they have reacted (Cicchetti & Beeghly, 1990b).
Delay or Difference?
An unresolved issue in the literature on children with DS is whether their unique characteristics represent developmental delays or differences. While the sequence of development is similar in children with DS and children who are developing typically (Hodapp & Zigler, 1990), children with DS often experience delays in their developmental skills (Wishart, 1988). For these children, the trajectory of development is not as constant as that of children developing typically, and the rate of development tends to decline (Hodapp & Zigler, 1990; Wishart, 1988). But the delays represent more than "development in slow motion" (Cicchetti & Beeghly, 1990b, p. 54). They can lead "to significant differences in the unfolding of subsequent developmental processes" (Wishart, 1988, p. 17). Hence, the development of children with DS appears to differ both qualitatively and quantitatively (Cicchetti & Beeghly, 1990a).
In terms of intervention, we must consider the possibility that children with DS have both delays and differences. If we only look at the delays, we might approach children from a maturationist perspective and wait for them to "catch up." If we only look at the differences, we might approach the children as having deficits to "fix." By looking at delays as well as differences, we can determine children's current levels of functioning and provide experiences slightly above those levels. At the same time, we can seek ways to adapt experiences that build upon children's strengths and meet their needs. Thus, intervention would "take into account the unique characteristics of the child, the age- and stage-level of functioning, the experiences to which the child has been exposed, and the stability of environmental conditions" (Cicchetti & Beeghly, 1990b, p. 31). Moreover, we should consider and learn from children's relationships with primary caregivers, as well as with certain aspects of caregiving environments (Cicchetti & Beeghly, 1990b).
Adult-Child Interaction Research
If development is viewed as encompassing the "mutual involvement of children and their social world" (Rogoff, 1990, p. 27), then it makes sense to examine children's early social contexts, such as adult-child interactions. Interactions between infants and their primary caregivers (most often their mothers) provide a window through which to view development. There is considerable research involving mothers and children with and without DS. The findings have important implications for adults who are working and developing relationships with young children who have DS in preschool and child care settings.
Interaction Behaviors of Mothers of Children with Down Syndrome
Researchers have found that mothers of children with DS have more trouble reading their children's cues than do mothers of children who are developing typically (Landry & Chapieski, 1989). In a study by Kasari et al. (1990), children with DS exhibited more frequent shifts in their neutral and positive affect expressions than children matched according to mental age who were developing typically. The frequency of these shifts may contribute to mothers' difficulties in reading the cues of children with DS. These shifts could likewise be challenging for other caregivers.
Mothers of children of DS respond to their children as often as mothers of children developing typically. Mothers of children with DS have been found to take a more dominant role, however, which may be due to their infants' less active roles (Mahoney & Robenalt, 1986). Researchers also have reported that mothers of children with DS use directives more often than mothers of children who are developing typically. Their findings may have to do with the type of directives used. Mothers of children who are developing typically tend to use questions to give directions. Although researchers may not consider questions to be directives, they can be an implicit type of directive. It is possible that mothers of children with DS have found that their children do not respond to questions, and so they rely on commands or explicit directives (Maurer & Sherrod, 1987). Other caregivers and teachers may want to think about how they give directions and whether their method is effective for children with DS.
Joint Attention Within Interactions
Early interactions between infants and their primary caregivers frequently involve both partners visually attending to the same object in the environment. This skill is referred to as "joint attention," and is instrumental in social interaction learning (Harris, Kasari, & Sigman, 1996; Landry & Chapieski, 1989). During a child's first months of life, caregivers promote joint attention by pointing and showing objects. During the second half of the first year, children who are developing typically begin to physically explore objects. Active and sustained object exploration helps children learn about their worlds. For infants, a close relationship exists among cognitive processing, attentional capacity, and active exploration of objects (Landry & Chapieski, 1989).
In a study by Harris et al. (1996) in which children were matched according to mental age, caregivers and children with DS spent more time in joint attention than did dyads in which the children were developing typically. In addition, the caregivers of children with DS were more likely to select the toys on which the dyad focused than did the caregivers of children developing typically. In those cases where the toys were selected by children with DS, however, joint attention lasted longer, and an association was found 13 months later that showed improved language skills. For children developing typically, the researchers found no difference in later language skills between using child-selected and adult-selected toys. This finding is further supported by research showing that children with DS have difficulty shifting their focus of attention, and that doing so may provide fewer opportunities to attend to language (Harris et al., 1996). In addition, findings from the Kasari et al. (1990) study indicated that children with DS looked less often toward objects out of their reach than children developing typically, which may be related to nonverbal object requesting differences. Because these studies are correlational, it is difficult to draw implications about facilitating language development around child-selected versus adult-selected toys. They do provide support, however, for attending to children's cues and following their leads.
Implications for Early Childhood Caregivers and Teachers
Several implications can be drawn from the literature on adult-child interactions in general as well as from the research focusing on children with DS. Research on parent-child interactions confirms the importance of considering each child's history, the immediate context and task demands, and the child's strengths and needs as he or she interacts with other children. Researchers also have identified effective adult interaction characteristics, which include warmth, attentiveness, and responsiveness. Children who interact with warm, attentive, and responsive caregivers tend to function at a higher level than children who do not have caregivers with these characteristics (Landry & Chapieski, 1989).
The findings about parent-child interaction in general provide helpful guidelines for adults interacting with all children in child care, pre-school, and primary school settings. Implications from research studies involving children with DS can then be applied according to specific adult-child interactions (McCollum & Bair, 1994). One such implication concerns adult and child roles. Because children with DS may take a less active role in interactions (Mahoney & Robenalt, 1986), adults working with these children may need to assume a more active role than they would with children who are developing typically.
A teacher might be uncomfortable taking an active role if he or she views the adult role as a dichotomy of child-directed versus teacher-directed. This perspective may be based on the early guidelines for developmentally appropriate practice (Bredekamp, 1987) in which didactic, teacher-directed approaches, when used "almost exclusively," were consider inappropriate. The revised guidelines, however, emphasize the need for both child-initiated and teacher-structured activities (Bredekamp & Copple, 1997). Adults working with children with DS should use a continuum of teaching strategies ranging from indirect to direct, depending on the needs and interests of the individual children involved and the specific situation.
Deciding on an approach to take requires reading the child's cues, which, as the research indicates, can be a difficult task. Yet, it is especially important to be able to read a child's cues when trying to jointly attend to objects. Doing so allows the adult to follow the child's lead in deciding upon which objects to attend to; increased attention is related to increased language proficiency about the objects (Harris et al., 1996). Therefore, teachers need to persevere in their attempts (McCollum & Bair, 1994). Doing so in a warm, attentive, and responsive manner is likely to lead to success and help expand children's learning opportunities. Teachers and other caregivers can learn from parents who are "able to match their children's needs for support" within interactions, thus succeeding "at setting the stage for participation, practice, and ultimately, development" (McCollum & Bair, 1994, p. 99).
A final implication from the research pertains to the use of questions when giving directions. Questions allow for choices. Although it is important to offer children choices, adults should not do so if they are not prepared to accept the child's choice. For example, asking children if they want to put their coats on when it is time to go home on a wintry day is inappropriate. Yet, adults often give directions this way. This habit may be additionally troublesome for children with DS, who may have difficulty understanding such implicit directives (Maurer & Sherrod, 1987).
Differences in interaction styles may reflect that the optimal environment for children with DS is different than that for children developing typically (Maurer & Sherrod, 1987). Adults working with young children need to be able to adjust their interactions and structure children's activities and environments in ways that support each child (Rogoff, 1990). They must provide learning environments that are optimal for all children, knowing that one size may not fit all! Research on children with DS illustrates the need for ongoing, continuous individualization. The research also challenges us to reconsider our views of normalcy and deficiency, in order to help all individuals reach their maximum potential.
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|Author:||Appl, Dolores J.|
|Date:||Sep 22, 1998|
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