Inclusion and parent involvement are considered best practice in early childhood education, but few empirical studies have focused on the practical application of these concepts. This study used qualitative and quantitative methods to investigate the perspectives of parents of children with disabilities and teachers in inclusive settings regarding parent involvement and factors contributing to successful inclusion. Most parents reported that they felt a high degree of involvement on the team, and teachers generally indicated positive attitudes toward parent involvement. Both parents and teachers acknowledged the need for a shared commitment among all involved parties. Parents also reported that positive attitudes toward persons with disabilities were essential to successful inclusion, while teachers focused on the need for supports and resources.
Ratings of importance to the respondent and ratings of degree of implementation of items in the three areas were uniformly high. Mothers and nurses had significantly higher ratings than neonatologists in implementation of caregiving. In addition, mothers and nurses rated importance higher than implementation for the areas of information exchange and relationships.
The purpose of the study is to provide data about 22 survivors over the age of 1 year with full trisomy 18 (12-59 months). Mothers completed the online, mixed method Tracking Rare Incidence Syndrome (TRIS) Survey provides data on birth information (e.g., gestational age, birth weight) and medical conditions identified at birth and at the time of survey completion. Data indicate similar birth characteristics to other studies and presence of syndrome related medical conditions including cardiac conditions, use of a variety of feeding methods, apnea, respiratory difficulties, and kidney issues. Associated interventions, sometimes considered "aggressive" or "intensive" treatments including cardiac surgeries were noted in the sample. Implications for treatment are provided and the need for additional research with this clinical subgroup is needed.
Limited literature exists on children and adults diagnosed with the mosaic form of trisomy 9. Data from the Tracking Rare Incidence Syndromes (TRIS) project has provided physical characteristics and medical conditions for 14 individuals. This article provides TRIS Survey results of 25 additional cases at two data points (birth and survey completion) as well as developmental status. Results confirmed a number of phenotypic features and medical conditions. In addition, a number of cardiac anomalies were reported along with feeding and respiratory difficulties in the immediate postnatal period. In addition, developmental status data indicated a range in functioning level up to skills in the 36 and 48-month range. Strengths were also noted across the sample in language and communication, fine motor and social-emotional development. Implications for professionals caring for children with this genetic condition are offered.
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