As I read the book Melanie: A Bird with a Broken Wing, I cried, laughed, and felt fortunate that the author chose to share her daughter with the readers. Author Beth Harry shared a remarkable story told from the heart in which was full of such strength, hope, determination and love. The author explains how a courageous mother struggles through her darkest moments, which included negative thoughts about her daughter in which were transformed into a deep and undeniable connection with her child. Throughout the ups and downs, Beth never gave up on Melanie. With the help of her support team, which included, parents, educators, advocates, and physicians, not only was Beth able to meet the needs of her child, but she was also able to gain knowledge about her child's disability, as well as, build strong relationships.
The warmth that parents bring to their children's lives starts at the moment they are born. The relationship between Beth and her child is one that shows affection. Melanie's mother, Beth went through the struggle of raising a baby girl who experienced many developmental issues, such as, language and mobility delays. Through the many ups and downs of Melanie's personal physical development, Beth confirmed her responsibilities as a parent, by becoming a caregiver, educator, and advocate for her daughter. While gaining knowledge of Melanie's disability and her own understanding of working with disabled children, she was able to build her own education of these topics. Beth educated herself on how to care for a child with cerebral palsy by doing things such as, attending guided parent support meetings, learning different teaching methods, volunteering at the OCCC, and participating in developmental classes. All children, especially children with special needs, have basic needs for acceptance, appreciation, and love. The 'exchange of unconditional love is an essential ingredient of family affection' (Turnbull, Turnbull, Erwin, Soodak, Shogren, 2011). Without Beth's continuous efforts and her unconditional love and care for her child's progress, Melanie may not have done as well as she did in her life, nor lived as long as she did.
When a dilemma occurs within a family, it is very common for parents to experience low levels of self-esteem. Like Beth, many parents, especially mothers, will try to build an understanding for why their child was born with a disability. Melanie's father, Clive, played a significant role in inspiring Beth to work as hard as she did in caring for their daughter. A few weeks after the birth of Melanie, Beth's feelings remained the same, 'I never doubted my love for her but often doubted my ability, even my willingness, to cope with the situation I found myself in' (Harry, 2010).
In addition to her husband, Beth explained that her deep connection to Christian values and concepts had helped her interpret her reaction to the challenges that Melanie brought to her life (Harry, 2010). Research consistently finds that families with children who have disabilities often increase their spirituality (Turnbull, Turnbull, Erwin, Soodak, Shogren, 2011). Consequently, this was not the case for Beth. Both Beth and Clive were spiritual people, but after Melanie was born disabled, Beth felt 'robbed and cheated by her own body' (Harry, 2010). She could not understand how a 'healthy body like her own could produce something so different' (Harry, 2010). Therefore, Beth's beliefs soon changed. Rather than believing 'everything happens for a reason,' (Harry, 2010) an embedded belief in Christianity, she explained that 'things happen and it is up to yourself to create both the meaning and the purpose of life' (Harry, 2010). Despite all of the difficult times, Beth never gave up on Melanie, which ensured her hopefulness in her daughter.
Throughout the story, Melanie's family shows evidence of cohesion and adaptability. The birth of Melanie was the beginning of the most difficult time in both Clive and Beth's life. Beth's mind never stopped asking questions about Melanie, such as, 'Would she have gained an ounce of weight?' (Harry, 2010). Melanie's parents were faced with some negative feedback from some family members and friends. However, no matter what obstacle crossed their path, they were able to handle every tough situation with communication and sensibility. Together, Clive and Beth had accepted that their daughter had brain damage and educated themselves on how to best care for their daughter. Like many children with disabilities, Melanie had many needs. Similar to Melanie's family, a basic function of families consists of meeting their members physical and health needs,' (Turnbull, Turnbull, Erwin, Soodak, Shogren, 2011) which both Clive and Beth ensured. My professional opinion is that Melanie had both accepting and supportive parents who unconditionally loved and appreciated their disabled child.
While try to cope with Melanie's tragic disability, the family met many positive and supportive people who served as educators in Melanie's life. To begin with, the Immortelle Center for handicapped children was where Melanie's greatest progress took place. At the Immortelle Center, Beth met Joan, Wendy and Deidre, physical therapists who vastly helped improve Melanie's growth in socialization. Despite the ups and downs in Melanie's progress report, Beth was delighted by the great amount of improvement Melanie had made in such a short period of time. Melanie was both alert and aware. For example, she understood what was being said to her. She was now a social being in the sense of interacting in a variety of ways with a variety of people. For example, she had conversations with people other than her parents. Instead of just quarreling, Melanie was now able to look, point and quarrel (Harry, 2010).
In addition to these women, Sarah Blacha from Toronto inspired Beth to believe in her daughter. As Melanie progressed in gross motor and socialization skills, Sarah began to see more potential in Melanie's development, which resulted in weekly therapy sessions. Beth loved Melanie, but when it came to her disability, Beth did not expect a lot from Melanie. Sarah played a significant role in giving Beth the confidence she needed to care for her daughter. Not only did Sarah teach Beth to be strong and confident, but she also encouraged her to have higher expectations and demands for Melanie.
While trying to cope with her daughter's tragic disability, Beth had many people who helped Melanie throughout her life. One person that I really thought outshined from all the rest was Venus Mark. When Beth heard the news of the diagnosis that her child was transitioning from tube to spoon feeding was both overwhelming and exhilarating. However, with the help of an astonishing woman named Venus Mark, Beth was given the confidence that she needed in order to take care of such a vulnerable child. Beth met Venus at the maternity clinic where she was then taught how to spoon feed Melanie in a way that was developmentally appropriate for a little girl with cerebral palsy. Not only did Venus teach Beth how to spoon feed her daughter, but she took the time to actually explain each step in depth (Harry, 2010). For example, Venus showed Beth how to get Melanie to open her mouth and relax her jaw. Even though it was her responsibility of being a midwife, Venus was very supportive and took on the task of ensuring Beth to be the best mother to Melanie that she could be.
Melanie was born in the 1970's. Since cerebral palsy was fairly new at this time, physicians were still educating themselves on how to diagnosis, treat, and manage cerebral palsy. Both physicians and psychologists did their best to asses and plan for Melanie's development and future. However, unlike today, there was a lack of technology in the 1970's. Therefore, Melanie was not able to receive a CT scan until she was 4 years old. While growing up with cerebral palsy, Melanie struggled with many things, such as, speech, swallowing, walking, self-feeding, etc. Sadly, even with the help of many family, friends, therapists, physicians, etc, Melanie only lived to be 5 years old.
Parents of children, especially children with disabilities, are often involved in their child's education (Turnbull, Turnbull, Erwin, Soodak, Shogren, 2011). In today's society, within my own school district, the assessment and planning for Melanie's development would be completed much differently. For example, a public education, similar to the Berlin Community School, would provide Melanie with free special services, such as, occupational therapy, physical therapy, speech therapy, and etc. (Turnbull, Turnbull, Erwin, Soodak, Shogren, 2011). However, they would not be responsible for any before or after school care programs. Yet, during school hours, Melanie would be placed in either a self-contained or inclusion classroom where her teachers would push for success. As for Melanie's parents, the district would offer a support team, which would include various social workers, a child study team, 1:1 aides and both general education and special education teachers. This support team would work together to plan specific steps that will help Melanie progress in her development and ensure the overall well-being of Melanie (Turnbull, Turnbull, Erwin, Soodak, Shogren, 2011).
I believe that both Beth and Clive did everything they could to provide Melanie with the best care, support, and love. I never truly realized what it felt like to be a parent of a child with a severe disability, until I read the book, Melanie: A Bird with a Broken Wing. As an educator who works with children whom have special needs, I really appreciated reading this book. I'd like to thank Beth Harry for sharing such a personal story and giving me a whole new perspective on my job and the relationship I need to build with the parents of the children in my class.
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