Educational Priorities for Children with Cri-Du-Chat Syndrome

Abstract

There are few data on the educational needs of children with cri-du-chat syndrome: a neurodevelopmental disorder that affects learning and development. We therefore designed an Internet survey to identify parents’ educational priorities in relation to children’s level of need/ability. The survey listed 54 skills/behaviors (e.g., toileting, expresses wants and needs, and tantrums) representing 10 adaptive behavior domains (e.g., self-care, communication, and problem behavior). Parents rated their child’s current level of ability/performance with respect to each skill/behavior and indicated the extent to which training/treatment was a priority. Fifty-four surveys were completed during the 3-month data collection period. Parents identified nine high priority skills/behaviors. Results supported the view that parent priorities are often based on the child’s deficits and emergent skills, rather than on child strengths. Implications for educational practice include the need for competence to develop high priority skills/behaviors and the value of assessing children’s deficits and emergent skills to inform the content of individualized education plans.

The intervention priorities of parents of children with autism spectrum disorders in Iran

“…Although this questionnaire had been used in three different studies and its construct validity had been confirmed (Pituch, Green, Didden, Whittle et al, 2010;Pituch, Green, Didden, Lang et al, 2010;Pituch et al, 2011), when a questionnaire is used in research it is recommended to implement Factor Analysis (FA) to extract the underlying latent variables (Howitt & Cramer, 2011). This was done for both Part A and Part B.…”

Psychomotor Development in Cri du Chat Syndrome: Comparison in Two Italian Cohorts with Different Rehabilitation Methods

“…The educational needs of children with CdC, according to their parents' opinions, have been discussed by Pituch et al [15], who reported parents with high priority personal safety skills.…”

Cri du chat syndrome.

“…Although the constellation of symptoms was described in multiple studies from the 1970s to the late 1990s, research over the past 20 years suggests greater phenotype variability as identified by significant advances in molecular genetic techniques. Specifically, the use of sophisticated methods has enabled researchers to better determine cognitive, learning, social, emotional, and behavioral outcomes of cri du chat syndrome and other genetic disorders (Cornish & Bramble, 2002;Pituch et al, 2010). Given the variability in deletion size and type, identifying phenotypic subsets is informative for both diagnosis and prognosis (Cerruti Mainardi, 2006).…”

“…It has been suggested that individualized education program goals should reflect parent priorities for the child's learning and development. Pituch et al (2010) surveyed parents of children with cri du chat syndrome to identify the educational priorities that parents have for their children. With respect to high-priority skills rated by the parents, communication was deemed important, particularly listening and responding appropriately to the teacher, asking for information when needed, and following directions.…”

“…According to Pituch et al (2010), parents also prioritized concerns regarding their child's inability to describe their feelings, wants, and needs. Addressing the psychological needs (i.e., emotional, behavioral, and social) of children with cri du chat and their families should be an essential component of a treatment plan.…”