Challenges of Raising a Disabled Child Essay

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 still trying to make sense of the fact that my son had a developmental and neurological problem that would affect him for the rest of his life. I wondered what restrictions we would face now and in the future. I still wasn’t sure if I could cope with his lack of development neurologically, physically, mentally or emotionally. I began to question God. I wondered why me. I wasn’t sure if I would have to stop working. I wondered how we as a family would work together to stay a family. I had so many questions, but no answers. I prayed asking God for help and guidance. Later, I began to realize that I had to be strong. I had to accept what the reality was with my son and his disability. It hasn’t been easy. We faced many financial problems, medical issues, several hospitalizations for my son, divorce; daycare issues especially since my son needed twenty four hour daycare. Day care is very expensive as well as diapers and wipes for disabled children. Insurance covers some things but not enough. A person has to be making next to nothing in order to get any assistance from the government; we needed assistance regardless of what we made monetary. I would have never known what disabled families went through to get their voice heard and children’s needs assisted unless I had to face these great challenges myself. So much goes into raising a child with disabilities. There are many variables that factor into taking care of a disabled child. Financial hardships are another important factor that influences parents’ wellbeing. In general families with children with disabilities experience much higher expenditures than other families (Newacheck and Kim, 2005) found that, on average, the total annual health care expenditures for children with disabilities were more than three times as much compared to children without disabilities. The financial strain incurred by families of children with disabilities is likely due to increased expenses related to the child’s needs as well as loss of employment or inability to work because of parenting responsibilities (Murphy et al. , 2006; Parish et al. 2008; Worcester et al. , 2008). Inability to engage in employment can also lead to feelings of isolation, a lack of fulfillment and low self-esteem (Shearn & Todd, 2000). Families of children with disabilities often report feeling isolated from the community (Freedman& Boyer, 2000; Worcester et al. , 2008). What I’ve learned from researching the challenges of raising a child with disabilities; as well as bein g a parent of a disabled child is that there is still so much more to be done. There is still research that hasn’t been touched regarding parents and their disable children. We the parents have to be the voices for our disable children. We have to be better informed about what our disabled children rights are. We have to be willing and ready to fight on behalf of our disable children. Parents and state officials have to work to get better laws passed to accommodate disabled children. Disabled children need better health care programs, better schools; a place for them to be themselves. Parents need a place to relax and not have to worry about dirty looks that people who don’t have disabled children give them. Parents shouldn’t have to feel ashamed that they have disabled children. We shouldn’t be looked down upon because our children are different. Our children shouldn’t be bullied or treated like they are worthless. Our children are special. They deserve the best that we can help them to achieve in life. They deserve a chance like the rest of us. We’ve got to come together and help each other to provide a better life for all! The questions we should ask researchers to study are many. One could be what’s being done to assist parents with disabled children? Are there programs to assist parents in child care for disabled children? Normal daycare centers are for infants through 12 years of age. As of today my disabled son is 16 years old and there’s really no day care for children his age. Another question is why do they go according to parents’ income in order to assist with social security disability? A parent shouldn’t have to be jobless in order to obtain assistance from social security disability. Yet a person who walks into social security disability and say my back hurt or that they have a condition can obtain money; work the system while the truly disabled suffer. There are so many people working the disability system and really aren’t disabled. We have to help the programs we have for our disabled children actually help the disabled children. In conclusion caring for a child with a disability can be challenging, but many of these challenges are likely due to a lack of necessary environmental supports. Future research should expand on these findings and policy makers, scientists and providers should give particular attention to the environmental support needs of parents in order to create policies and interventions that are more family centered.