Behavioral features of CHARGE syndrome: parents' perspectives of three children with CHARGE syndrome.
As the population first diagnosed with CHARGE Syndrome has aged, information has emerged about specific behavioral features of this syndrome. Once the medical features are managed, it is the behavioral features that interfere with our children's ability to form reciprocal relationships, to gain formal communication skills, to make the educational gains they are cognitively capable of, and to ultimately care for themselves. In telling the informal case studies of our children, we hope their behavioral commonalities, in spite of their medical and educational differences, will be apparent as well as the complexity of the multiple types of behavior observed. We remain hopeful that answers can be found that will help our children and our families cope with this very debilitating feature of CHARGE.
Lauger
Kimberly
K
Arizona Deafblind Project, Tucson, Arizona 85754, USA. klauger@earthlink.net
Cornelius
Nancy
N
Keedy
Wendy
W
D000015:Abnormalities, Multiple / Q000473:pathology / Q000503:physiopathology* / Q000523:psychology; D001519:Behavior / Q000502:physiology*; D002648:Child; D002652:Child Behavior / Q000502:physiology / Q000523:psychology; D002675:Child, Preschool; D002754:Choanal Atresia / Q000473:pathology; D003071:Cognition / Q000502:physiology; D003103:Coloboma / Q000473:pathology*; D003638:Deafness / Q000473:pathology; D004423:Ear / Q000002:abnormalities; D005260:Female; D005835:Genitalia / Q000002:abnormalities; D006130:Growth Disorders / Q000473:pathology; D006330:Heart Defects, Congenital / Q000473:pathology*; D006801:Humans; D007223:Infant; D018730:Infant Behavior / Q000502:physiology / Q000523:psychology; D007231:Infant, Newborn; D008297:Male; D010287:Parent-Child Relations; D010290:Parents / Q000523:psychology; D013577:Syndrome