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PubMed2003

Promoting sexuality across the life span for individuals with intellectual and developmental disabilities.

Sexuality is a human right that is important to all individuals regardless of age, gender, orientation, or developmental level. Sexuality is closely related to a person's self-concept and self-esteem. Individuals with I/DD have a right to sexuality and sexual expression. Nevertheless, persons with I/DD have historically been denied this right, and many structural and attitudinal barriers exist to their healthy sexuality. Paradigms in sexuality education have shifted toward recognizing sexuality as a human right, a major life resource, and an integral part of one's makeup. To broadly address the development of healthy sexuality for individuals with I/DD, the issue needs to be normalized, not ignored or avoided; which means involving parents, staff, and professionals. Working with parents to overcome parental overprotection and social isolation is critical. Parents can provide opportunities for their sons and daughters to network and form meaningful personal relationships, with peers including encouraging association with peers outside of school or work hours.

Adolescent↗
PubMed1994

The Functional Independence Measure for Children (WeeFIM). Conceptual basis and pilot use in children with developmental disabilities.

Few tools are available to pediatricians for tracking and monitoring disability status in children. We describe the conceptual basis and pilot use of the Functional Independence Measure for Children (WeeFIM). Our pilot use of this instrument in children with limb deficiency, Down's syndrome, spina bifida, cerebral palsy, and extreme prematurity demonstrates that the WeeFIM is a valid measure for tracking disability in preschool age and middle childhood. The WeeFIM measures the impact of developmental strengths and difficulties on independence at home, in school, and in the community. This allows the pediatrician to prioritize interventions for enhancing comprehensive functional outcomes and supporting families.

Adaptation, Psychological↗
PubMed2002

Predictors of developmental disabilities after open heart surgery in young children with congenital heart defects.

OBJECTIVES: To determine the prevalence of persistent developmental impairments in children with congenital heart defects and to identify factors that enhance risk for an adverse outcome. STUDY DESIGN: Eligible infants (n = 131) <2 years of age requiring open heart surgery were recruited prospectively. Subjects were assessed during surgery and again 12 to 18 months later with standardized developmental assessments and formal neurologic examinations. RESULTS: Mean age at follow-up testing was 19.1 +/- 6.6 months. Assessments indicated that 41% had abnormal neurologic examinations. Gross and/or fine motor delays were documented in 42%, and 23% demonstrated global developmental delay. Univariate and multiple regression models identified the following factors increasing the risk for persistent developmental deficits: preoperative and acute postoperative neurodevelopmental status and microcephaly, type of heart lesion, length of deep hypothermic circulatory arrest, age at surgery, and days in the intensive care unit (P <.05). CONCLUSIONS: Children with congenital heart defects commonly have ongoing neurologic, motor, and developmental deficits well after surgical correction. The cause is multifactorial and includes brain injury before, during, and after heart surgery.

Abnormalities, Multiple↗