Abstract
Children with Down syndrome and their families who had participated in an early intervention program between 1974 and 1977 were interviewed 25 years later regarding family and child experiences; parents' hopes and dreams; perceptions of the supports and challenges; children's educational placements; and children's current social, vocational, and living situations as adults. Subjects were an individual cohort of children who were born just as the Education of All Handicapped Children Act (P.L. 94-142) was enacted in 1975. Consistent with this educational policy, the children received educational services in their neighborhood schools, many in inclusive placements. Their access to inclusive educational placements and services appropriate services, however, lessened as they neared and attained adulthood at age 21. With respect to parent perceptions and experiences, findings from this investigation disclosed the challenges faced by families such as medical complications, teasing or ostracism, disappointments in children's inability to achieve some adult milestones, and lack of adequate services and supports when the children reached adulthood. However, they also revealed the positive feelings and experiences in each family. All families described the contributions that their child with Down syndrome had made to the family and the joys and growth that the family had experienced.
DOWN SYNDROME (DS) is believed to be the most common specific form of mental retardation and it was one of the first syndromes associated with mental retardation to be identified (Roizen, 1997). Most children with this developmental disability are identified at birth or shortly thereafter on the basis of physical characteristics associated with the disorder and genetic analyses subsequently are conducted to confirm initial clinical impressions. Because of the ability to diagnose this disorder in the early months of the child's life and because of the developmental delays generally associated with this disorder, children with DS often have been targeted for research studies on cognition and early development. Studies have examined the delayed developmental trajectory of these children across areas of development (see reviews by Cicchetti & Beeghly, 1990; Hanson, 1981; Spiker & Hopmann, 1997). Because of these documented delays young children with Down syndrome have also been referred for specialized early intervention educational services for a number of years. Evaluations of these intervention regimens generally have reported positive outcomes for children enrolled in early educational services (see reviews by Hanson, 1986; Spiker & Hopmann, 1997).
The investigation reported in this paper is a 25-year follow-up study of children enrolled in one of these early intervention programs during the period from 1974 through 1977 (Hanson, 1978, 1981). The program consisted of home-based early intervention services implemented by the children's parents. Educational goals and programs were developed during weekly or biweekly visits to the family's home by a home visitor (termed parent advisor) who, together with the parents, designed, implemented, and evaluated the strategies. A variety of measures of infant developmental outcomes were employed in this investigation and infant participants were compared with a sample of typically developing infants on activity level, state, temperament, and caregiver-infant interaction measures (procedures and results reported in Hanson, 1978, 1981). In terms of developmental trajectories over the course of the early intervention program (children's ages birth to 3 years), findings from the Bayley Scales of Infant Development showed that these children's average scores ranged from 69.2 to 75.8 on the Mental Development Index (MDI) and from 63.8 to 88.1 on the Psychomotor Development Index (PDI). Although these scores were below the normative range, children in this program scored approximately 20 points on average higher than those described in a contemporary British study of children (Carr, 1970). With respect to children's attainment of targeted developmental milestones (eg, sitting, crawling, walking, feeding self, following simple directions), children in this early intervention program demonstrated these skills at earlier ages than a comparison group of children with Down syndrome who did not receive early intervention (reported in Hanson, 1978, 1981, 1987). Few differences in activity level, state, and caregiver-infant interaction were noted when these infants were compared to the group of typically developing peers (Hanson, 1978, 1981). Differences on temperament measures were noted between the 2 groups only on activity and motor development, smiling and laughter at 6 and 12 months, distress and latency to approach sudden or novel stimuli, and duration of orienting at 6 and 9 months (Rothbart & Hanson, 1983).
The approach taken in this early intervention program was to focus on the family and on supporting and assisting parents to "teach" their infants. Parents were actively involved in decision-making and implementation of all aspects of their children's services. Given the intense and active participation of families, questions were posed about the carryover of these early experiences and skills on parent perceptions and experiences in rearing their children as they grew. The purpose of this investigation, therefore, was to interview parents and their children (now on average 25 years old) in order to describe their experiences in rearing their children with Down syndrome. Information was sought on family and child experiences as the child developed; parents' hopes and dreams; family members' perceptions of the supports and challenges they had encountered; children's education placements throughout the years; and children's current social, vocational, and living situations as adults.
Few investigations have followed the developmental pathways of a specific cohort of individuals with Down syndrome longitudinally with the exception of the study by Carr (1995) in the county of Surrey in England. Carr followed a cohort of children with Down syndrome from their births (N = 54) in 1963 and 1964 for 21 years into young adulthood (N = 35). Her report detailed the children's intellectual achievements and abilities, their self-care and independence, issues of behavior and discipline, their health and social pursuits, their families' and siblings' experiences, and the services they received. Thus, her comprehensive study provided a thorough descriptive analysis of many facets of life for these individuals from the early 1960s through the 1980s in England.
The investigation described in this article also focused on an individual cohort of children with Down syndrome. These children, however, were born in the United States and their lives paralleled a period of rapid change in educational policy and systems in the United States following the enactment of the Education of All Handicapped Children Act (P.L. 94-142) in 1975. These children were born just as this law was enacted. As a result, in most cases, they were in the first waves of children who had participated in early intervention services and their families anticipated that the children would be served in least restrictive educational settings in line with the state and national policy shifts. The early intervention focus was placed on the family as the context for early intervention services and on the parents as the primary decision-makers and agents of service delivery to their children.