For those who have never had the experience of working with a child with disabilities, the task might seem to be an overwhelming one. However, many of those who have ever had the chance to do so will appreciate that the experience can be an extremely rewarding one - especially if one has the chance to work with skilled professionals. This paper recounts my own experiences working with such professionals and my cousin, who has Down Syndrome.
Most women during the last decade undergo a number of diagnostic tests when they are pregnant, including generally a test for Down Syndrome. However, my aunt did not have such a test because, at 26, she was far younger than most mothers who give birth to babies with this syndrome, which includes a number of physical symptoms (such as slightly slanted eyes and shortened fingers and toes) as well as cognitive disabilities ranging from the mild to the severe. Those Down Syndrome individuals with the most severe cognitive disabilities associated with this genetic condition are unable to live independently or even in a home environment and tend to be institutionalized. My cousin has a moderately severe level of mental disability, and has always been able to live at home with his parents and his siblings.
Because my aunt and uncle were not expecting a child with disabilities (after having had four children who had no health problems) their initial experiences were fairly chaotic as well as traumatic. Because I lived close by (only six blocks) and because I have always been especially close to their oldest child (my cousin) I became involved in helping to care for my cousin. Because of my early experiences with my cousin and the way in which the family depended upon and received support from a range of professionals I am now considering entering one of the fields that helps families in similar situations.
I learned two fundamental lessons from my experiences in working with the many professionals ...