On a recent visit to Sofia, Bulgaria as an occupational therapist, I participated in several parent group meetings where parents with children with disabilities shared their ideas and needs in focus group settings. Several areas of need were identified and parents expressed needs that were especially important to them in parenting specially abled children.
Parents particularly expressed a need for more professionals and educators who could provide support and education to the parents outside of formal treatment sessions. Parents also expressed a need to have a more physically accessible society; sidewalks, roads, public transportation, and physical barriers at school still form obstacles to the inclusion of children at school and in the community.
Another concern, which I have heard universally expressed both in the United States and in Bulgaria, is the need for public understanding. Parents long for more compassion, patience and understanding when going into public with their children with disabilities. Specially abled children often have conditions that include behavioral differences such as in autism and cerebral palsy. The social burden of facing public opinion is often overwhelming for parents who long to be embraced in the community. This sentiment was reflected in parent focus groups in Bulgaria.
Parents often related that the help of other parents was a great relief for emotional stress. The development of parent support groups is a new and growing trend in Bulgaria. Through the instrument of parent support groups the children with special needs are gaining new opportunities and the parents are feeling more optimism about the future.
One challenge that parent groups face is sustainability, as the material and emotional requirements of parenting a child with special needs is often so great that adding a parent group commitment is difficult for many parents. In one focus group in Sofia, parents described their parent group experience as very positive and self-sustaining. When asked why they were able to maintain individual commitment to the group meetings, which occurred almost weekly, they expressed that there were two main motivating factors. One was the ability to use a secure, regular, and beautiful location; the large treed yard of a member family who lived near ...To read the full article, login or become a member --- it's free!
by Elaine Jean Struthers, Ph.D., OTR/L