This case study can be used with Julie E. Artis’s “Breastfeed at Your Own Risk.” The article, which appeared in Contexts in Fall 2009, can be read online here.
At the age of 38, Monique gave birth to her fourth child, a daughter named Kayla. Kayla was born with severe developmental and physical disabilities. As Kayla grew older, Monique and her husband tried diligently to get her the help she needed in order to maximize her development. They put her in speech and physical therapy programs and brought her to many health specialists. Caring for Kayla was expensive and time consuming. All of the doctors and specialists Monique talked to told her she needed to spend more time helping Kayla one-on-one; but Monique couldn’t afford to stay at home, and she and her husband each spent more than 50 hours a week at work. Kayla was cared for during the day by a nurse who came to Monique’s home, but after 5:00 p.m. Monique was responsible for her care.
As Kayla grew older, Monique began to fall behind at work and spend less time caring for her three older children. Monique could tell they were resentful of Kayla for this. Kayla required constant supervision and needed help eating, changing clothes and using the bathroom. Kayla became easily frustrated and had trouble sleeping, which kept Monique up many nights. Monique was often discouraged and irritated and felt less happy overall. When Kayla was 5 years old, Monique became pregnant again. Overwhelmed at the prospect of caring for Kayla, her three other children and a newborn baby, Monique considered other options. She found out about a live-in care center about 3 hours away from her home that specialized in taking care of children with disabilities. Monique thought that the care center would be a better home for Kayla than her own. She thought the nurses and the teachers at the center would help Kayla more than she could.
But, the center was very expensive and paying for Kayla to live there until age 18 would prevent Monique from helping any of her other children with their college tuition someday. Also, many of the specialists had told Monique that Kayla might be better off if her mother cared for her. Monique considered the negative things other people would think of her if she brought her daughter to live at the care center instead of caring for her in the home. But, she also considered how much better her life and the lives of her other children might be if they did not have the responsibility of caring for Kayla on a daily basis. She would have more time for her other children and more time to develop her career.
1) If you were in Monique’s shoes, what would you do?
2) What do you think a mother’s role is in this situation?
3) What responsibilities do the larger community and the government have with respect to childcare? Do they have these same responsibilities regarding childcare for disabled children?