Families with disabled children represent a significant part of all American families. Having a disabled child can produce a profound effect on the entire family, which in turn may affect the well-being of the child with special needs. There is a strong necessity to learn more about, how the health problems of disabled children affect their parents, siblings, and family members, as well as their interaction between one another. Parents of the disabled child may be subjected to increased stress, take a toll on physical and mental health, have difficulties with finding appropriate and affordable child care, and experience troubles at work, bringing up other children, etc. All of these problems may be caused by an increased sense of guilt, or reduced self-esteem.
Megan and Geoff are parents of three children, the oldest of whom has severe cerebral palsy. I used to know this family very well, since we lived in the same neighborhood for several years. I remember that I always admired the ability of these people to raise three well-adjusted children, meet the numerous demands of caring for their disabled daughter, Rachel, and managed to keep their marriage and warm relations in the family. I visited their house for an interview on the Saturday afternoon, 28th September, when the whole family was gathered at home. Both Megan and Geoff kindly agreed to give answers to all of my questions and offered me hot tea. The friendly and happy atmosphere in the house was obvious.
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"Parents and Families of Disabled Children".
We started talking about the condition of Rachel. I asked Megan to describe the symptoms currently showed by their daughter, as well as the challenges she is experiencing in development and learning. I found out that Rachel attends the third grade. She remains in a wheelchair the whole day, at home and in school. She has poor fine motor control, for instance she is not able to write with a regular pencil or a pan. Rachel is able to do certain things with her hands, she can push large buttons and she really likes working on the computer. She has a hard time talking and she does it very slow. It may be a little difficult to understand her at first, but you can make out what she is saying. Rachel enjoys learning very much. What she really dislikes is being bored. Though being only a little girl, she wants to be treated like an adult, to participate in everything and learn like every other child. Rachel herself stayed in the room, as the interview progressed. One thing I noticed myself was that she is already a great personality. Whenever I looked at her, she always had a smile on her face. She was very polite, when greeting me and asking if I wanted some tea (though, of course, she was not able to prepare it herself).
Afterwards I asked about Rachel`s experiences at school. In particular, I wondered if there were any types of interventions used to address her developmental needs. Geoff answered that Rachel attends a middle class school. The staff and teachers try to collaborate and seem to work well together. They are always very positive and do their best to include Rachel into regular classrooms. When Rachel goes to her studies, there is always an aide with her. This appears to be very helpful to Rachel, just like the regular education teacher. Rachel seems to get and record information out of being mainstreamed. However, as Megan had noticed, the teacher does not seem to treat Rachel like other children. She does not really care if the homework gets done. When the question is asked to the class, Rachel seems to be overlooked. She is satisfied with Rachel being present in the class and does not know what else to expect from her. Rachel`s parents do not agree with this. In connection with this I asked if Megan and Geoff had any ideas, how the educational process may be facilitated for Rachel. Megan answered, that she would appreciate more vocal activities for Rachel. This might require much more time from the teacher to spend with her, but that is the teacher`s job. Megan also stressed the necessity to talk with her daughter while other children are doing independent work. She mentioned that it would be great to make Rachel feel more included during class discussions.
When I asked Megan, what kind of things she expects her daughter to do upon completion of K-12, she laughed and said it was too early to think of so distant future. When you have a disabled child, every small victory is a great one. Rachel`s parents do not expect her to do impossible things, they have very concrete goals of what they would like their daughter to achieve during the next year. The major goal for Rachel is to improve her fine motor skills and speaking abilities. To achieve this she should participate in any activity that involves grasping, practice drawing and writing with a pencil, she should as well take part in group discussions and give oral presentations for her projects.
I found it very important to ask Rachel`s siblings about their experience of having a disabled sister. Both Nick and Kate are older than Rachel. Nick is 15 and Katherine is 17. Being a sibling of a disabled child means receiving less parental attention, which sometimes creates conflicts and misunderstandings in family. In case parents pay unequal attention and time to their children, the siblings may become angry and jealous. Katherine confessed that though she is very ashamed now, one year ago she was jealous of all the attention and money her parents put into bringing up a child that is “not normal”. She felt as though she was “left out”, “forgotten” and “unloved”. “So much money was spent on Rachel`s equipment, but when I wanted something, I had to use my own baby-sitting money” – that is how Katherine described her feelings. However, after some time Katherine has understood that her sister has special needs and cannot survive without the money being spent on her. She is also trying to make her brother Nick understand that to avoid the same problem.
The conclusion I made for myself after completing this interview is that, without any doubt, raising a disabled child affects the whole family – parents have to spend much time and money to provide good conditions and future possibilities for their child. They have to research or invent new methods and techniques to teach their child basic things. This affects their personal and professional lives, as well as the life of their other children.
