The purpose of this study was to describe and explore the experience of inclusion of students with Williams syndrome, a rare genetic condition of a microdeletion on chromosome 7 which has medical, behavior, and cognitive issues. The study was conducted by gaining an understanding from the parents’ point of view. The study was twofold. First, the study investigated how the parents advocated for inclusion and then the study investigated accommodations and modifications that have helped their students with Williams syndrome to be included in regular education classrooms in early elementary school.
A qualitative study was conducted by interviewing 10 mothers of children with Williams syndrome who were included for 75% of the day in a regular classroom for two years in kindergarten through third grade. The participants’ interviews on advocating for inclusion for their child and their viewpoint on successful accommodations and modifications were recorded. Findings were reported through 12 major themes which emerged from the data.
None of the mothers described advocating as easy and many discussed the years of work involved to get the supports and services necessary for inclusion and the time involved in attending school meetings and training. Unfortunately, six of the parents described advocating as a “fight.” This still did not stop the parents from continuing to advocate. The three most important things the parents had done to advocate were to network with other parents with and without Williams syndrome, attend a Williams Syndrome Association National Conference, and have their child evaluated at a Williams Syndrome Clinic. These three items provided the mothers with the support information needed to request their child be in the regular classroom and the supports necessary for effective inclusion. Parents often advocated for specific services and accommodations and modifications. All of the children of the parents who participated in the research had a paraprofessional in the classroom. Computers were frequently advocated for by the parents along with specific educational programs. All of the parents had positive stories about how inclusion was working for their children. None of the participants regretted advocating for inclusion and saw many benefits for their children.