The following study describes the experiences of parents with a child with a disability in Jewish day schools. The findings suggest marked differences in the experiences of parents whose child was able to remain in the day school and those who left as a result of their child’s disability. In the latter group, the themes of loneliness and marginalization were common. Although parents hoped to feel included in the Jewish community—with Jewish day school an important expression of this desire and commitment—many found few appropriate programs and services and a general lack of awareness of and sensitivity to disability issues in the Jewish community.
Discussion and Conclusions
Parents’ interviews focused on three areas: parent experiences with their child’s day school, their decision-making vis-à-vis day school, and their experiences in the Jewish community. Two primary narratives surfaced in parents’ stories: the stories of the parents who stayed in the day school and those who left. Parents in both groups shared a number of similar sentiments: the need to be constant and vigilant advocates for their child, the need to educate the school about their child’s disability, the challenges of procuring appropriate special education services, and the importance of open and honest communication between parents and schools. Despite these commonalities, the experiences of these two groups of parents varied widely. The parents that ultimately left the schools had decidedly more negatives stories and were far less successful in building a positive and productive relationship with school professionals. A relevant factor may be the profile of the children in the group of families whose child stayed in the school: All these children had relatively mild disabilities that were able to be accommodated easily within the day school, and none of these children exhibited difficult behaviors. A purposefully broad sample—parents who self-identified as having a child with special needs in a Jewish day school—allowed this finding to surface. Given the range of students’ disabilities, it became readily apparent which disabilities schools were better able to accommodate than others.
For the parents who left the day school, the decision-making process varied, but all recounted the difficulty, pain, and loss they experienced when leaving the school. For Orthodox-affiliated families, the decision to leave the day school, a mainstay of the community, was particularly difficult.
In discussing their experiences with the Jewish community at large, parents discussed the lack of sufficient services and supports for children and families. They also noted the general lack of awareness and insensitivity to issues of inclusion that permeates the Jewish community. Finally, they shared that, for many, their primary source of social support is from outside the Jewish world. Other families with a child with a disability are parents’ primary sources of encouragement and connection. Interestingly, parents did explain that the relationships they had within the Jewish community spanned the denominations. Having a child with a disability, it seems, trumped religious observance.
Parents’ choice to stay connected and involved Jewishly varied depending on the nature of their experience and their level of religious commitment. More observant families, by and large, remained involved despite the above challenges, while less observant families were more open and willing to leave and/or decrease their level of involvement.