Parent versus professional perception of mothers' adjustment to their multihandicapped offspring

The purpose of the study was to assess the perceptions of mothers of multihandicapped offspring, special education teachers, and special education supervisors regarding the mothers' adjustment to their multihandicapped children. Specifically, the nature of the adjustment process was investigated; whether it was more aptly characterized as chronic sorrow or time-bound grief. Additional information was sought on the availability and usefulness of parental support services.

Subjects included 15 mothers of multihandicapped offspring, 8 special education supervisors and 7 special education teachers. All were associated with the Cooperative Centers for Exceptional Children, in rural southwest Virginia.

Data were collected by personal interviews. Subjects responded to open-ended questions and constructed graphs representing their perceptions of parental distress at 12 developmental crisis points.

All of the mothers and educators constructed graphs representing chronic sorrow as opposed to time-bound grief. All but one of the mothers indicated that although they experienced chronic distress, it was a periodic rather than continuous phenomenon. Comparison of the mean group ratings for each of the 12 crisis points revealed significant differences in the groups' perceptions of parental distress at only two crisis points: ''management of a crisis unique to the child", for which the educators underestimated the mothers' distress; and "onset of puberty", for which the teachers overestimated the mothers' distress.

All respondents perceived a difference in mothers' distress levels at various developmental crisis points. ''Birth/diagnosis'', discussion of placement of the child outside of the home", ''management of a crisis unique to the child", and "discussion of guardianship" were perceived as highly distressful by all three groups.

Deficits were revealed in the existing parental support service delivery system(s) in the geographic region of the study. Services to parents of preschool children and offspring age 13-15 and older appeared to be insufficient to meet the parents ' needs. A lack of organization and communication among community agencies, the limited scope of available services, and parents' reluctance or inability to use available services were cited as contributing factors to the problems in service delivery. The support services ranked as the most useful by parents and educators were individual counseling, respite care, parent groups, and conferences with the offspring's teacher.