Author: Larson, E. A.
Source: The American Journal of Occupational Therapy, Volume 54, Number 3 (May/June 2000, pp. 269-280)
This issue of American Journal of Occupational Therapy is devoted to acknowledging the complexity and the depth of mothers' work, which includes creating family routines and fostering child health, development, and socialization.
This article is a qualitative study that examines the relationship among 1) mothers' orchestration, or organization, of daily occupations or activities, 2) the special maternal work of raising a child with disability, and 3) the mother's feelings of well-being. The participants in this study were six Mexican-origin mothers between the ages of 27 to 42, who have children with disabilities such as cerebral palsy, autism, blindness and global developmental delay. Data were collected through interviews, a daylong observation, and two forms of questionnaires on the topic of well-being and stress.
There were two major findings: 1) successes in mothering a child with disability were intimately associated with the mothers' feelings of well-being, and 2) eight thought processes were used by the participants to organize maternally-driven and child-sensitive occupations and daily occupations.
The first finding showed that these participants frequently linked their own emotional and physical well-being, and ability to meet the demands of mothering, to the family's basic needs and health as well as to achievement of desired goals. These mothers reported that although they accepted their child in spite of the disability, at the same time, they also rejected the disability, longing for a more typical experience of mothering. Consequently, positive evaluation of their situations, a sense of control in their life, and an optimistic attitude allowed these women to both mother a child with disability and sustain their own well-being.
The second finding illustrated the eight thought processes which included planning, organizing, balancing, anticipating, interpreting, forecasting, perspective shifting, and meaning making used by the participants to orchestrate daily occupation or activity. These eight thought processes were applied to the orchestration of the daily occupation of "feeding a child dinner." This form of occupation and its components varied among participants because of the child's special needs, the participants' values, the fit within that day's routine, and other contextual issues.
In the dining routines, common among all participants was the participation of mother-child pair, the consumption of food, and the importance of a nutritious diet. However, each participant differed in the orchestration processes of planning, organizing, balancing, anticipating, interpreting, and forecasting. The child's disability, number of additional participants during dinner, timing of dinner routine, sequence, strategies, and space all had influences on the structure of "feeding child dinner." For the process of planning, most participants planned either a special diet based on the child's nutrition needs or planned a meal for everyone in the family but fed the child nutritional supplements if the child did not eat the meal. Time played a central role in the organizing process during meals. When pressed for time, one participant combined feeding with other activities, such as TV watching. Other participants began feeding the child with disability first and then ate their own meal. For the balancing process, in order to meet the needs of the other family members, several of the participants served the other siblings first so that more time and attention would be turned to the child with disability. One participant served a meal for everyone at the same but the mother and the child with special needs would remain until the child had finished his meal.
Anticipating and interpreting became more essential for the child who was nonverbal and had limited communication. Most participants anticipated the types of behaviors around and during feeding. They knew when the child was hungry, slowed down feeding pace for "gassiness," deleted food that the child would dislike, or devised strategies to avoid certain negative behaviors. Participants with a child who was nonverbal had developed interpretations of their children's facial expressions, sounds, and gestures. Within the occupation of feeding, the forecasting process was used in evaluating the child's comfort and health, and the mother's ability to provide care in the future. For example, two participants were concerned about their child's getting too heavy for lifting and other types of caretaking. The process of forecasting often connected the present and future, and was grounded in the mothers' goals and plans.
While this article used six processes of thought to illustrate the orchestration of feeding, the other two overarching processes, perspective shifting and meaning making, were discussed in a broader sense. These two processes were used by the participants to adjust to the impact of the child's disability, to accept the modified lifestyle imposed by the disability, to maintain optimism, to understand early marital conflicts over disability in a new light, and to love the child despite of the disability.
Overall, this article attempts to provide insights and understanding of the orchestration of occupations by mothers of a child with disability. The information gained from this study can augment health care professionals' ability to enhance parents' well-being, to help parents organize daily occupations, or activities, and to assist them in thinking about future possibilities.
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