Challenges of Raising a Disable Child
Baltimore City Community College
Amanda Peterson, M.A., C.A.S.
December 1, 2011
Challenges of Raising a Disabled Child
Caring for a child with a disability can be challenging due to parenting responsibilities and the difficulties they encounter when interacting with an often unreceptive environment. Consequently, parents can be at increased risk for excessive levels of personal distress which in turn can adversely affect the well being of the child and the entire family unit (Plant & Sanders, 2007). Parents of children with disabilities can be at an increased risk for psychosocial distress (Parish, Rose, Grinstein-Weiss, Richman & Andrews, 2008; Plant & Sanders, 2007). The parenting responsibilities for parents of children with disabilities often require a significant amount of time to complete, can be physically demanding, can disrupt family and social relationships, and can adversely affect caregiver employment (Brannen & Heflinger, 2006; Seller & Heller, 1997). Perhaps as a consequence of these additional impacts, family caregivers of children with disabilities can be at increased risk to experience depression, physical health problems, and decreased quality of life (Feldman, et al., 2007; Ones, Yilmaz, Cetinkaya, & Calgar, 2002). The added challenges of caring for a child with a disability may lead to more stress and greater physical and emotional health risks for parents and their families (e.g., increased conflict with spouse; Murphy, Christian, Caplin & Young, 2006) compared to families without a child with a disability (Feldman et al., 2007).
This topic is particularly personal for me because I know first hand the psychological affects and challenges that a handicap child could have on parents, family members, and friends. My son was two months when I notice that something just wasn’t right with him. I noticed him favoring one side instead of looking straight ahead. I mentioned my concerns to our family doctor. His doctor didn’t see it as a problem. She said to just continue to watch him. Two months passed and still no change, so at his next appointment I expressed my concern again. I insisted that she run tests on my son immediately. I knew something seemed different; I just couldn’t put my finger on it. I had already had two other boys so something just didn’t sit right with me. The doctor sent my son to be tested at University of Maryland Hospital and my son was diagnosed with Hydrocephalus Dandywalker Malformation with Palsy. He had to have surgery at six months to have a shunt placement to drain the water from his brain. I was devastated. My husband and I went through several defense mechanisms. The first I believe was denial. We didn’t want to face the fact that something was wrong with our child, our baby. He seemed so perfect when he was born just a few months ago. We went through repression, rationalization and intellectualization. We couldn’t wrap our minds around the fact that our child would be different from other children. Nobody wants to believe that something is wrong with their child. I felt a little embarrassed for fear of what people might think about our child or what someone would say. So many things raced around my mind. We wanted to blame the doctors; maybe they did something wrong in my prenatal care. I went over in my mind again and again of every little thing I did when pregnant to ensure that I had did everything I was supposed to do. I didn’t drink, smoke or do drugs. What happened? We tried to search our family history genetics. We just came up empty. My husband and I became depressed, frustrated, and angry. I felt helpless about my son’s condition. I wasn’t sure what to do. Finally, I began to investigate my son’s condition. I read all I could get my hands on. I searched for schools and other medical resources to help me address my son’s needs. In the back of my mind I was...
References: Plant, K. M., & Sanders, M. R. (2007) Predictors of care-giver stress in families of preschool aged children with developmental disabilities. Journal of Intellectual Disability Research, 51, 109-124.
Shearn, J., & Todd, S. (2000) The perspectives of mothers of children with intellectual disabilities. Journal of Applied Research in Intellectual Disabilities,13, 109-131.
Worcester, J. A., Nesman, T.M., Raffaele Mendez, L., M., & Keller, H. R. (2008) Giving voice to parents of young Children with challenging behavior. Exceptional Children, 74, 509-525.
CHALLENGES OF RAISING A DISABLED CHILD
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