Parents of children with disabilities have many reactions to their children's special needs, and these reactions may focus on positive or negative factors (Ferguson, 2002). Some parents go through several emotions roughly in a sequence; others may experience only one or several discrete reactions. For some, the reactions may be minor and their approach pragmatic. For others, their child's disability might affect their entire family structure and life. Part of your work with parents includes recognizing that the way they respond to you may be influenced by any of the following responses to their children's disabilities (Ferguson, 2002):
- Grief. Some parents feel grief about their child's disability. Sometimes this is a sorrow for the pain or discomfort their child may have to experience; sometimes it is sadness for themselves because of the added stress on the family when a child has a disability; and sometimes it is a sense of loss for what the child may not become. Grief may be temporary or it may be chronic, a realization nearly every day of how their lives are different from those of families with children who do not have disabilities. Parents have a right to grieve about their child-a right educators should respect.
- Ambivalence. Another reaction parents may have toward their child is ambivalence. This feeling may occur as parents attempt to confirm that the child's disability is not temporary or fixable, as they try to determine what the best educational options are for their child, and as they ponder how their child will live as an adult. The decisions that parents of children with disabilities have to make are often difficult, and they continue throughout childhood and adolescence and sometimes through adulthood. Parents often attend meetings with school personnel at which tremendous amounts of information are shared with little time for explanation, and they often meet with representatives from many different disciplines. It is no wonder they may feel ambivalent.
- Optimism. A college student was once interviewing the parent of a student with a mild intellectual disability. When asked what it was like having a child with an intellectual disability in the family, the parent replied, "Mary is my child. Just like any other child, I love her as my child. She is sometimes funny and sometimes clever and sometimes naughty. She can really get into trouble. She's just like my other children, except she's Mary." For this parent, her child's special needs are just part of the configuration of needs that any child in any family might have. In this family, the emphasis is on the person, not the disability. There are many families like this one. In these families, the special needs of the child are met without an extraordinary reaction. Parents may work diligently to optimize their child's education, and they are hopeful about their child's future. They work closely with educators and others to ensure that the child's life, whatever it may be, is the best one possible.
How parents respond when they have a child with a disability depends on many factors. One is the intensity and complexity of the disability. The reaction of parents whose child is diagnosed with a learning disability in third grade will likely be somewhat different from that of parents who learned two months after their child was born that she could not see.
Another factor affecting the way parents respond is how the information about the disability is shared with them. When such information is presented in a coldly clinical manner, without adequate sensitivity to the parents' emotions, their response can be quite negative. This is true even for mild disabilities. When one parent was told about her son's learning disability, she said, "Wait a minute. Stop and let me think. Do you realize what you've just said? You've just unraveled my whole way of thinking about my son. What do you mean a learning disability? What does that mean? Will it ever change? How can you sit there and keep talking as though it's no big thing?" A father related how he learned about his daughter's moderate intellectual disability. A physician simply said, "She's retarded. There's nothing we can do." The father left the office crying, partly because of the information and partly because of the insensitive way it had been communicated.
Yet another factor influencing a family's response to having a child with a disability is culture (Harry, 2002; Klinger & Harry, 2006; Obiakor, 2007). In some cultures, disability is a spiritual phenomenon that may reflect a loss of the soul or evidence of transgressions in a previous life. In other families, a child with a disability is considered a reflection on the entire family. In some families, a disability is accepted as just part of who the child is. In others, it is believed that a cure should be sought. It is important to listen to family members as they discuss their child to better understand their perspective on him as well as their response to ideas and suggestions that you and the rest of the team make.
One other factor that affects the parents' response concerns resources, including financial support (Lott, 2003). When parents have the resources necessary to provide what they believe is the best set of support services for their child, they are less likely to experience negative emotions. However, when parents know that their child would benefit from some intervention, such as surgery, a piece of computer equipment, or tutoring, they are invariably frustrated if they cannot provide that needed support and have difficulty accessing it from school and community resources. Another important resource is personal. In large families, families with many supportive relatives living in the same community, or families with a strong network of neighbors and friends, the stresses of having a child with a disability are greatly reduced. When parents are isolated or when friends and family are uncomfortable with the child, the parents will likely experience far more difficulties.
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