Folklore From Families With Children With Special Needs
When this project was assigned this group saw the opportunity to introduce their peers to a typically insular community. The special needs community thrives and and is very active amongst themselves, but often do not have the chance to share with typical families the traditions and customs that revolve around their special children. As a result, many of the parents disclosed that they were frustrated by the number of myths and misconceptions that surround the topic. In an effort to dispel some of this misinformation, we interviewed a number of parents who live in the Massachusetts area who have young or adult children with a variety of special needs. One of the project members, Angelina Lionetta, knows them all personally because of her own relationship with the special needs community, her younger brother. She started a choir, called “My Own Voice”, in which each of the interviewed parents are involved. This group received a number of submissions, most traditional or customary, that are posted below.
In addition to folklore, many people sent personal stories describing their every day experiences. While it is not a form of folklore, the following stories range from humorous to touching and poignant, that this group thought spoke to the way that families adapt to their children over the years and day by day.
This group truly appreciates the stories, videos and images that these families shared. Throughout the submissions, this group noticed a few similarities. The first a tradition, in which poems and stories, while authored, were ritually shared between parents and within families when they received a diagnosis for their child. A number of parents disclosed that they received
The Holland Poem” or “When You Thought I Wasn’t Looking” from friends, family and even doctors as they began to consider their children’s special needs. Similarly, a few families recounted how they read We’ll Paint the Octopus Red to their typical children to help them understand their sibling better. This group believes that this form of ritual sharing is akin to their incorporation into a new community and a new family life.
The second similarity observed relates to using music as a form of communication, in both personal and academic settings. Many of these children struggle with an inability to communicate well with a spoken language. A lot of these children are non- or minimally verbal, while others lack the social skills necessary to uphold a meaningful conversation. Where these capabilities lapsed is where different forms of music began to substitute. Parents sing to their children, and children can try to sing or hum back. Peers, both typical and atypical use songs, dances and chants to interact. In the classroom, teachers employ songs to engage the students both socially and academically. This group considered this use of music as a custom, where while some of the songs sang are authored, many of them are not, and it is the way in which they are used that makes it significant. Parents and teachers share these methods and tips among themselves in order to discover means of connection with their child, and this custom of applying music fills that need.
In conclusion, this project sought to share the lived experiences of special needs families and their traditions and customs. This group found a few poignant traditions and customs that they are glad to have the opportunity to share.
Angelina Lionetta, Mahnoor Maqsood and Drew Waterman
Tags/Keywords: Special Needs, Children, Family, Autism, Downs Syndrome, Music, Stories, Poems, Songs