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. . .the family is viewed as system and the family members are viewed as interdependent parts.--Dadds, M. (1995)
Picture, if you will, your idea of the ideal family. Perhaps your family is composed of a mother and a father who are both committed to their loving relationship. Their children (as many as there may be) are physically active, they perform well in school, and they express themselves openly to their parents who they undoubtedly respect and admire. This perfect family may live in a comfortably sized home surrounded by a white picket fence on a beautifully landscaped street in a small town. The neighborhood watch reinforces the feeling of security as children play unsupervised in their yards and leave the door unlocked behind them as they walk to school. Or, if you prefer, this family lives in a studio apartment overlooking the city. They wear the trendiest clothes and they frequent the museums, theaters, and top-notch restaurants as family activities. Now imagine that the mother of your perfect family has just given birth to a down-syndrome baby. In another picture, imagine that a child in your perfect family has been in a car accident sustaining severe brain damage and is paralyzed from the waist down. How has your family changed? What affect does having a physically or mentally disabled family member have on this ideal family?
Working at the Philadelphia Ronald McDonald House, I cannot help but to imagine what the families with whom I come in contact were like before their children became ill or what the families would be like if these ill children were never born. I struggle with the idea that these children have greatly changed their families' lives forever simply by their existence. I know that this statement is true of any child in any family, but with the addition of an illness or disability, I wonder if these children positively change these families' lives or if they cause more problems than some families have the will to endure. When looking at the structure of a family and the interdependency among its members, I question the effects of a physically or mentally challenged family member on the state of the entire family.
This is certainly not a new topic of concern to my classmates. We often discuss family dynamics with respect to mental illnesses. We also express our disbelief and utter surprise in the way some family members regard a disabled family member. We question how a mother can abandon her child in an institution where constantly changing nurses and volunteers must become the unstable family to the disabled. Through my experiences at the Ronald McDonald House, however, I am beginning to understand how having a disabled or ill child requires such immeasurable strength, that not everyone can meet the challenge.
Five years ago my Aunt announced that she was going to have an abortion. She had been pregnant for a few months. One day she accidentally fell down a flight of stairs and she had some vaginal bleeding. The physicians told her that although her baby was all right, he/she might be born with slight retardation or other defects not yet detected. Instead of taking the risk, my Aunt decided to abort. One of her most surprising reason for taking this course was her belief that her extended family would be ashamed and embarrassed by the birth of a mentally disabled child. My Aunt did not want to be the source of "shame" in our family.
At first, I remember being angry at my Aunt's beliefs. How could she be so na´ve? I thought that she was blaming my family when it was really she who would feel embarrassed by her own child. Then, I realized that if my Aunt really did believe these thoughts, her decision was for the best. She could never love a mentally disabled child as much as her other "healthy" children. She could not fulfill the extra needs and special care that that disabled child may have. My Aunt would set a poor example to her other children about how to regard individuals with mental disabilities. If this child would be a burden on her family, then it was best for the mental health of everyone (particularly the unborn child) for the baby never to be born at all.
In this case, my Aunt had the choice of deciding whether she would allow a disabled child to affect the dynamic of her family. In many of the cases at the Ronald McDonald House, families are not given the opportunity to make such a choice. For example, I met a family who was involved in a car accident six months ago. The parents suffered no major injuries, but their three-year-old daughter sustained severe brain trauma. The daughter can neither walk nor speak, and she can only eat soft foods and liquids. When I look at this little girl, I begin to picture my three-year-old nephew. He runs in the yard, climbs over all the house furniture, he is so curious about life, and he can certainly be described as a little chatterbox. It is said that girls develop faster than boys do, so I can only imagine the phrases that this girl once spoke, the beautiful songs she would sing, the games she would play, the pictures she used to draw.
In Families, Children, and the Development of Dysfunction, Mark Dadds explores how families function as cohesive units and how every member, including children like this little girl, plays a vital part in the functioning of a family. He argues that some psychiatrists believe that families have a hierarchical structure to them. "Individual families develop structures based on implicit rules that regulate individual behavior so as to facilitate daily functioning" (15). This little girl's mother told me how she and her husband used to own a restaurant. The father took care of the financial aspects of the restaurant while the mother managed the staff. They both spent equal time with their daughter who they sometimes brought to the restaurant with them or she would be watched by her grandmother. So, this family seemed to follow the "universal rule" of parents have more power in decision-making than children and they had their "individual rules" of father as financial decision maker, mother as business manager, and grandmother as caretaker. These rules helped to structure their lives so that they could function with ease, but as Dadds warns, the rules must be flexible so when change is forced upon them, the family will not fall apart.
After the car accident, this family encountered this forced change. The family lost their business. They have stayed at the Ronald McDonald House for the past six months and they are unsure as to when they will be able to leave. The father spends all day looking for a job, trying to sell his vacated restaurant, and enjoying time with his friends, never spending time with his wife or child. The mother spends all day with her disabled child. She can not communicate with her daughter as she used to, so the mother must guess when her daughter is hungry or sleepy or upset. When the mother speaks to others, she never makes reference to how her daughter used to be before the accident. I think the mother is bored and depressed, and she seems to harbor feelings of guilt because it was her daughter who got hurt and not herself. The grandmother no longer plays a major role in the child's life because the treatment her granddaughter receives is in Philadelphia and the grandmother resides in North Carolina. In one moment, the structure of the family changed.
Dadds also mentions that "family subsystems can be organized along various dimensions such as generation, gender, interests, or functions, and these subsystems, which include the extended family, can overlap, interact, and separate according to the specific demands placed on the family. Thus each family member will belong to several subsystems involving a variety of roles and relationships" (15), but what subsystems does this little girl now belong to? She could once be described as the first born, a small child, a girl, the one who loved to sing, the one who makes her family smile, etc. Now do these descriptions mean anything? She is still the first born, a small child, a girl, and she can still make her family smile, but mostly, she is categorized by the subsystem labeled as disabled. She is the one who makes her family worry over medical bills and insurance policies, she is the one who causes them to move to Philadelphia, the one who must keep her mother at her side at all times. These are the family's new roles and relationships. The mother once spoke of her fifteen-year-old nephew who has Down syndrome and her three-year-old girl as if they were the same person. She said that they were not much trouble and described them as quiet, sweet, and complacent. She then described her other nieces and nephews on an individual basis, describing their individual characteristics and unique quarks. They were described by their various subsystems while her daughter was placed in the same subsystem as her disabled cousin. Will this little girl forever be labeled by her disabilities?
I am not certain that this family used to follow my idea of the ideal family situation. I am certain, however, that their family was turned upside down by the car accident and their daughter's acquired disabilities. The daughter seems to have lost her identity. The parents lost their jobs, their healthy and playful little three-year-old, and now the parents have lost time spent as a family. I wonder if the parents will stay together. I wonder how the mother can stand being alone all day and how she can handle the stress of being the sole caretaker of her child. What is going to happen to this family? Is this what having a mentally and/or physically disabled child does to all families?
I have seen families who stay together and survive as a happy cohesive unit in the face of adversity. I would like to think that this little girl's family would be one of them. Although the family structure had changed, a new structure continues to be created. Although the roles within the family had to adjust, the mother is still the mother, the father is still the father, and the child is still the child in need of love and guidance. I do not know if these parents still think about how their actions or how external factors that affect their moods will influence their daughter. Is it even a concern? Can she understand fighting, screaming, crying? Maybe she cannot understand such flares of emotion. She cannot even express her own emotions. Perhaps this is why parents are able to place their children in institutions. Even adults need to feel that their love is being reciprocated rather than staring into a blank face. Perhaps they feel that their child does not understand the notion of abandonment. The more I think of it, the more I begin to believe that this is the case. I see this little girl and her family and I see little hope. Unfortunately, my experiences at the Ronald McDonald House are making me pessimistic about the future of some of the families dealing with such shocking changes in their lives. I imagine that the parents will become frustrated with their daughter and want their lives to change. If she does not progress, neither can they. I think they may place her in an institution one day and restructure their lives without her. Until then, they are adjusting to their new situation and are optimistic that their daughter will one day be able to prove all the physicians wrong and walk out the hospital doors saying goodbye.[an error occurred while processing this directive]