Disabilities develop as family affair

Children born with Down syndrome and other disabilities face tough challenges in learning to care for themselves, communicate and socialize, and master schoolwork.

New findings, gleaned from the largest and longest investigation of its kind, offer a rare glimpse at specific ways in which family life either fosters or frustrates these kids’ development.

The study, led by educator Penny Hauser-Cram of Boston College, also reveals some of the challenges faced by parents of these youngsters. As children with Down syndrome or two other disabilities approach adolescence, their parents experience a marked surge in feelings of stress, isolation, and depression related to child-rearing. This increase far outpaces any such trend observed among parents of children with no disability.

Since school services for children with disabilities generally do not include direct support for their parents, “the [unmet] needs of parents may have long-term consequences for their children, especially as they enter adolescence,” Hauser-Cram’s team concludes. The researchers present their results in the current Monographs of the Society for Research in Child Development (vol. 66, no. 3).

The new study tracked 183 children diagnosed with Down syndrome, motor impairment as evidenced by severe disturbances of muscle tone and coordination, or developmental delay of unknown cause. Children entered the study as infants or 1-year-olds who had been enrolled in any of 29 early-intervention programs in the Northeast. Most of the kids were white and had well-educated parents, at least one of whom was employed.

The researchers used a battery of tests, along with parent and teacher questionnaires, to assess the children’s social, intellectual, and communication skills at five times before age 10. On these occasions, the children’s parents described their emotional responses to child-rearing and family life.

As has been noted for other youngsters, children with disabilities influence their own mental development, Hauser-Cram’s team says. A child’s motivation to succeed plays a prominent role in this process. For example, the children who at 3 years old gamely persisted in trying to solve a series of problems–figuring out how to use simple toys and putting together puzzles–also improved the most by age 10 on intellectual tests and in their performance of daily routines, such as dressing and feeding themselves.

This trend particularly characterized children with motor impairment and developmental delay of unknown cause. Perseverance on tasks boosted intellectual growth less effectively in children with Down syndrome, the scientists say. That condition, which often results in mental retardation, may restrict cognitive potential more than the other two disabilities do, they note.

Regardless of their disability, children also improved more in all areas if their mothers consistently interacted with them in a responsive, warm style. Again, the influence was weakest in the cognitive realm among kids with Down syndrome.

This “unprecedented” study may spark a much-needed examination of the developmental effects of special education versus integration, or mainstreaming, into regular school classes for children with various disabilities, comments psychologist Robert M. Hodapp of the University of California, Los Angeles.