Williams Syndrome Reflection

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Diagnosed with Williams Syndrome at the age of 5 and renal disease at the age of 22, Terry’s family is not unfamiliar with the concept of loss. Throughout the interview conducted with his father, Mr. Ben, I attempted to understand how he was able to cope with the crises and how it has affected his way of life. One of the most impressive observations for me was the way Mr. Ben took on the caregiver role with such dedication and acceptance. Based on the Stress and Coping Theory by Lazarus and Folkman, I considered two aspects during my reflection: cognitive appraisal and coping (Stroebe & Schut, 1999). On primary cognitive appraisal, Mr. Ben consistently portrayed himself as a man who has accepted the obstacles in life without resentment. This…show more content…
He also highlighted Terry as one of the factors that motivates him, despite the fact that Terry can be a handful. When describing how he would try to make Terry learn from his mistakes, Mr. Ben showed not frustration, but acceptance and love. For me, it seemed like Mr. Ben was able to skilfully draw strength from his obstacles, and this consequentially awarded him emotional support and resilience. His reiteration of how he would try his best to overcome obstacles also showed his problem-focused coping. He was, in my opinion, able to handle everyday problems because he is actively driven to seek remedies. His description of how he considers himself to be his greatest support, coupled with the active efforts that he undertook – from choosing to withdraw Terry from school when he deemed it ineffective to taking charge of his meal preparations and dialysis trips – demonstrated his high internal locus of control (Rolland, 1994). This strong perceived locus of control is evident because he believes that his actions can make a difference, and is integral in helping him to cope psychologically with crises (Rolland, 1994). The…show more content…
Ben’s actions also reflect a special meaning that he has ascribed to Terry’s illness. By taking on the role of the caregiver, he takes on the persona of Terry’s protector. Although he described this life as seemingly uninteresting, he feels that it is suitable for someone of his age. I do believe that that, coupled with the way his acceptance of the present situation, shows how he has found meaning and purpose in his son’s illness. His accepting response towards the crisis, however, did make me wonder on a few occasions whether if it implies acceptance or resignation. The latter felt especially strong when he talked excitedly about the hair saloon business that he had closed down years before. I struggled to make sense of whether this meant that although he is relatively at peace with his current arrangement, a part of him still wishes to return to his former career. And yet, because he perceives that wish as somewhat unattainable, he does not dwell too much on it and focuses only on what he described as here and now; as Terry’s caregiver. Although this might have helped him to accept the situation and develop resilience, I do wonder whether his identification with his role and beliefs may be rigid to a point where it impedes his personal growth. His insistence on thinking only about the present and the lack of planning of the future also seems to imply a rather narrow focus that displays no indication of change. This can be worrying, especially given how

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