Contributors

Elyse Johnson

Reina Melendez

Marta Leon

Crystal Cardoso

Brittney Ward

Question 1: Family Characteristics and Interactions

Melanie’s family is composed of herself, her father, her mother, and younger brother. She was born with cerebral palsy which put a tremendous amount of stress and uncertainty on her parents. After the diagnosis, her mother Beth seemed to alienate herself from some of her friends. She began to seek relationships with her family and people in similar situations. This might be because her former friends could not relate to her situation. Beth and Clive definitely experienced marital conflict and emotional distance. Beth struggled with her own emotions and it became hard for her to help Clive through his. However, they had a strong marriage, friendship, and the support of family that helped them get through the conflict. While Beth had some troubling thoughts early on after Melanie’s birth, she loved her daughter and realized it was an issue within herself she had to overcome.

Family Characteristics and Interactions continued...

Her negative thoughts may have been transmitted to Melanie if Beth didn’t realize the struggle within herself. Her dream was her subconscious mind telling her that her issues were within and shouldn’t be directed toward Melanie. Beth then utilized the many resources available to her to relieve the burden and help her daughter. Melanie had many “helpers” including doctors, nurses, therapists, family members and friends. They all helped Melanie in one way or another.

Family Characteristics and Interactions continued...

Bowen Family System Theory

Triangles: Beth's relationship with her daughter Melanie formed the main components of the triangle, with Clive being the third "outsider". This is due mainly to the Melanie's medical needs and her parent's stress levels. Throughout Melanie's life, Beth made every effort to provide for her daughter and meet her every need. With time, Beth seemed to become dependent on Melanie as her daughter took a leading role in Beth's life. Once Melanie arrived home from the hospital, Beth took on a majority of the care while Clive returned to work and a sense of normalcy. Clive had a more down-to-earth approach regarding Melanie's situation, whereas Beth was consumed by "what-ifs" which she could not control. By being Melanie's primary caretaker, Beth could have some control over her daughter's fate, thus creating a strong bond with Clive being left out.

Family Characteristics and Interactions continued...

Bowen Family System Theory

Differentiation of Self: Beth began her role as a mother with a moderate differentiation of self. As defined by Bowen, a person with a low differentiation of self relies on others to build their character and make decisions. A person with high differentiation of self is confident in their abilities and does not rely on others to properly function. In our opinion, Beth began her story in between mid and low levels as she needed opinions, support, and advice from others while she doubted her ability to care for her newborn. As time went by, Beth began to develop a confidence in herself as she became more familiar with her role as a mother and primary caregiver. She cast aside those who did not share her positive outlook and surrounded herself with those who outwardly supported her situation. Beth did not rely on approval or acceptance from others.

Family Characteristics and Interactions continued...

as she did not need the validation. Later on in Melanie's life, Beth felt so strongly about her commitment to Melanie's future that she was able to make medical and therapeutic choices easily on Melanie's behalf. She was able to look at her situation with a clear mind instead of from an emotional vantage point.

Nuclear Family Emotional Process: Bowen lists four basic relationship patterns, with only one fitting this story. "Marital Conflict" may have been a factor during Melanie's upbringing as Clive was often away working while Beth performed a majority of the care for Melanie and Mark. Although Beth does not specifically mention conflict within her marriage, she does make comments such as "in those early days, it was more difficult to talk to Clive about specific fears" (pg. 8). Due to

Family Characteristics and Interactions continued...

the limited dialogue presented between Beth and Clive, as well as the fact that they later divorced, we can assume that there was some marital conflict occurring during Melanie's upbringing.

Family Projection Process: It is difficult to say if this was a part of Beth and Melanie's story. Beth began Melanie's life with dismal expectations for her daughter. Melanie lived up to those expectations until meeting with Dr. Pape. Dr. Pape saw Melanie's potential, thus exciting Beth and giving her a glimmer of hope. At that point, Melanie began to make smalls strides toward success, thus following her mother's projections.

Emotional Cutoff: In the beginning of Melanie's life, Beth had difficulty socializing with those who did not support her or her daughter's diagnosis. She disassociated

Family Characteristics and Interactions continued...

herself from anyone she felt did not support her, including certain doctors and friends. Beth leaned on her family for support during this time, and was able to make new friends that were supportive of her thoughts and actions.

Cultural Values

Beth has African and European origins and Clive is of Indian and African origin. They spent many years in Trinidad, then relocated to Canada after Melanie's diagnosis. Both Beth and Clive value family and keep close connections with family members throughout the story. Beth encourages a sense of community by starting the Immortelle Center and providing therapeutic services to children in need. While neither one of them very religious they had values that were embedded in Christianity.

Question 2: Perspectives of Every Major Character

 Melanie – Child with multiple medical issues. Melanie had many challenges from the time she was born until her death 5 short years later. However, she was resilient and intelligent in her own way. The therapists described her as having her mother wrapped around her finger, so she knew how to get her way. She was a happy little girl who touched many lives.

 Beth – Mother of Melanie – Beth tries hard to be a good mother but somewhat sees Melanie as a burden when she is first born. She soon realizes that the problem is within herself. She is scared she will not be able to take care of Melanie properly. As her support system grew, so did her confidence in her ability to take care of Melanie. As Melanie gets older, Beth learns more about Melanie’s condition and becomes as advocate for her daughter as well as other children with disabilities. Beth was a committed and loving mother. 

Clive – Father of Melanie – Clive wants to be a great husband and father to Melanie but he doesn’t quite know how to cope with Melanie’s condition in the beginning. Clive made sure he provided for his family by working in Trinidad and Canada. This allowed them to take care of Melanie’s medical expenses and allowed Beth to dedicate her life to helping Melanie and other special needs children and their families.  While Clive didn’t show too much emotion throughout the story, he definitely had his ways of dealing with his feelings. As Beth states, "he preferred not to openly discuss fears while they were at a speculative state" (pg. 8). While it seemed as though Clive was distant, it was obvious there was a bond between him and Melanie.

Mercedes, Elizabeth and Glenna – Melanie’s Caretakers – The saying it takes a village to raise a child never rang truer in the life of Melanie. All of these women helped Melanie develop physically, socially, and academically as much as they could. They helped her learn as much as she could by setting goals for her and encouraging her. Mercedes and Beth grew very close and she saw her as a daughter. Even though it was Mercedes who was taking care of her when she choked, Beth ensured her that Melanie’s death was not her fault. Mercedes was always there for Melanie.

Dr. McDowall – Melanie’s first pediatrician – He was the first to examine and diagnose her with her condition. He answered all of Beth’s questions and tried to reassure her to the best of his ability. Dr. McDowell presented himself as a patient doctor who tried not to upset Beth during the initial diagnosis meeting.

Dr. Karen Pape – One of Melanie’s doctors – According to Beth, Dr. Pape was very intelligent and refreshing. She was the first doctor to order CT scans of Melanie’s brain which helped Beth understand her daughter’s condition. Dr. Pape was a very caring and patient doctor and truly wanted to understand more about Melanie’s condition.  

Sarah Blacha – Melanie’s Therapist – Dr. Pape recommended Ms. Blacha to Beth. She was a very significant person in Melanie and Beth’s support system.  She always encouraged Melanie and taught Beth to believe in her daughter’s abilities. Ms. Blacha helped Beth develop procedures that would help Melanie eat better and she was there to support her through the process. 

Family Involvement

From assessment to intervention, Beth’s involvement was critical in getting Melanie the help she needed. Beth’s parents and Clive’s family were also very supportive throughout the whole process. In the sections that follow, you will note that while the doctors are the experts, Beth provided them with a starting point.

Assessment

Melanie’s assessment began the moment she was born. Her mother, Beth, immediately noticed something was amiss. The first sign of trouble came when Melanie did not immediately cry at birth; rather Melanie gave a delayed whimper. Next, the nurses noted that Melanie, who was a full-term baby, was significantly underweight at just four-and-a-half pounds. Beth soon noticed that the midwife was feeding Melanie using a tiny pipette and only a couple of drops at a time.

Question 3: Assessment, Diagnosis, and Interventions

Finally, there were issues with regard to Melanie’s vision that needed to be diagnosed. Specifically, Beth noticed Melanie’s eyes would remain fixed for long periods of time and she worried that Melanie could be blind. To make matters worse, Melanie was fragile, weak, and unable to breathe on her own or swallow. Several professionals assessed Melanie in order to try to make sense of the complications, including her pediatrician, speech therapist, psychologist, neurologist, and ophthalmologist.

Diagnosis

Aside from Beth’s assessment, Dr. McDowall would be the first to assess and diagnose Melanie. Her inability to suck or swallow was a sign that there was damage to at least one part of the brain. In contrast, babies without brain damage learn to

Assessment, Diagnosis, and Interventions Continued

suck and swallow on their own. After the swallowing issue, doctors advised

Beth and Clive to continue spoon-feeding so that Melanie could learn to swallow with practice. Following this, Melanie began experiencing choking episodes. She could also do things such as lift her head, but not perform other primitive functions. Melanie’s rate of head growth had also slowed, which was not a good sign. She could see but not interpret things in her field of view, which told the doctor there was some degree of mental retardation present. Later, Melanie was diagnosed with a severe electrolyte imbalance. Ultimately, the OCCC doctor stated he was not convinced of the other pediatrician’s report where he diagnosed Melanie with spastic type cerebral palsy. However, the neurologist diagnosed Melanie with athetoid cerebral palsy, which includes fluctuating muscle tone.

Assessment, Diagnosis, and Interventions Continued

Intervention

Beth did everything she could to help Melanie, not just by following her motherly instincts, but also by following the advice of her doctors. For example, when Melanie was having trouble swallowing, Beth purchased a special Belcroy bottle. While at the hospital, Melanie was given a feeding tube to aid in her eating and artificial oxygen to help her breathe. Melanie’s incubator also provided her with oxygen she needed. The milk Melanie drank was also made heavier so that it would sit better in her stomach. When Beth was concerned Melanie may be blind, the pediatrician performed a test to check that she could, in fact, see. One other intervention included turning Melanie on her side, which allowed the food and saliva to drain out. Doctors kept Melanie at the hospital in order to observe her and test various foods and medications. Other interventions included speech therapy, physical therapy, brain scans, and cognitive therapy.

Question 4: Interventions Based on the Family's Cultural Values and Practices

Beth and Clive grew up in Trinidad where modern medicine was commonly used to ease ailments. They agreed to treat Melanie within the medical community rather than with prayer as they were both somewhat religious but did not believe in divine intervention. Beth's two brothers were also doctors, so she had additional support in that area.

Beth valued family relationships, so when interventions occurred, Beth made sure she was a participant in her daughter's care. Beth was raised to look at the positive side of situations, which she used to propel Melanie forward with her various therapy appointments. Her culture valued a community-approach to child rearing, so Beth made sure Melanie had multiple caregivers providing companionship and various services to her.

Beth was very community-oriented and wanted to help the special needs community in Trinidad in addition to her daughter. Beth founded the Immortelle Center to help these children blossom. She had volunteer therapists come in to assist in the children's care, and Melanie quickly became a very special student. In fact, the Immortelle Center helped Melanie advance quickly through physical and speech therapy techniques.

As noted in the text, Melanie's physical therapist states, "in physical activity, Melanie is very highly motivated. She cooperates very well in physiotherapy sessions and we have noted that she will practice and persevere repeatedly on a physical exercise alone during the day when left unattended" (pg. 142). Melanie flourished with help from her community.

Interventions Based on the Family's Cultural Values and Practices Continued

Throughout her memoir, Beth displays an array of beliefs as it relates to herself, Melanie, and her relationship with Clive. Beth describes her relationship with Clive prior to the birth of their daughter Melanie as a “charmed life” which had not reached yet reached any hurdles. Beth exhibited initial resentment toward Melanie when she was born, indicating that if she was going to give any trouble that it would be best if she passed (pg. 4). She furthered this resentment, specifically citing feeling betrayed by her own body and referring to Melanie as a “flawed and inadequate version of myself" (pg. 12). She continues to reflect on her feelings of resentment and is able to see that she simply lingered for a “normal motherhood”.

Question 5: Major Changes in Beliefs/Perspectives

With the lingering resentment of Melanie, her relationship with Clive went from a charmed one to one where she felt that she could not express her true feelings. Consistent with the family theory model differentiation of self, Beth's resentment is primarily due to her own poor sense of "self". While enduring her mixture of emotions toward her daughter seemingly alone, Beth faces many hurdles all of which reiterate the inadequacies she felt in herself. When given an initial diagnosis for Melanie, Beth became consumed with the reactions other would have on this “flawed child and failure of a woman” (pg. 20). It was not until Melanie was being treated at Ontario Crippled Children’s Center and new observations of Melanie’s behaviors were being assessed that Beth’s perspective changed. “Perhaps you will really be a person for me now, instead of a flawed piece of myself” (pg. 78)

Major Changes in Beliefs/Perspectives Continued

Once Beth was able to see Melanie as her own individual and not as a reflection of herself, she was able to focus on her progress and provide a healthy environment for Melanie to flourish and expand her own capabilities. Melanie made steady progress and was eventually able to be included in a structured classroom setting where she was able to learn and begin to thrive. Not only was this change in perspective beneficial to Melanie but it also allowed for Beth to regain her sense of self and begin her own educational and business endeavors. Up until Melanie’s sudden passing, Beth was able to see Melanie for her strides and accomplishments, indicating that she was given a 1% survival rate at birth and that in her 5 years of life she was surrounded by love. 

Major Changes in Beliefs/Perspectives Continued

Since Melanie’s birth, the Harry family had multiple interactions with educational and medical professionals. Most of these interactions were reinforcing and empowering in nature whereas others can be characterized as being dismissive. Beth’s initial interaction with Dr. McDowell, Melanie’s pediatrician, was one that she often reflected as flawed, as he was the first to introduce a sense of fear on Melanie’s condition. In complete contrast, Venus Mark, the midwife in charge of the nursery where Melanie remained for some weeks after her birth, was very encouraging of Beth’s ability to care for Melanie. The midwife was the first to initiate maternal contact between Beth and Melanie and demonstrated how properly care of Melanie insisting that Beth was capable of doing so. It was this initial encouragement that allowed Beth to gravitate from a spectator’s role to an active role in her daughter's care. 

Question 6: Medical and Educational Interactions

Medical and Educational Interactions Continued

The remaining interactions with medical professionals and the Harry family were constructive in nature. Beth consistently describes everyone’s demeanor as positive and kind hearted with Melanie’s interest as paramount. The interaction between Beth and Sara Blancha at the OCCC was by far recorded as paramount. Beth merits her interaction with Sara as one that “taught her to believe in Melanie” and see her strides instead of her limitations. As Melanie’s overall health began to stabilize within the parameters of her limitations, the Harry’s interacted more with educational professionals as it related to Melanie’s development.

Beth’s endeavor with the first Immortelle Center marked the initial interactions with educational professionals for the Harry Family. Beth attributed Melanie’s initial developmental progress to the support provided by her colleagues Joan, Wendy, Deidre and Gerard. It was through their collective efforts that Melanie was able to continue to flourish in an educational setting both at the OCCC and the second Immortelle Center. The overwhelming support received from both medical and educational professionals throughout Melanie’s life made all the difference in her quality of life. 

Medical and Educational Interactions Continued

Question 7: Interactions with Family and Friends

Beth maintained positive relationships with her family during the duration of Melanie's life. Her relationship with her husband Clive is briefly mentioned as Beth states he "was my rock from day to day, listening with patience to my recounting of every movement she had made" (Harry page 12). Yet when describing Melanie's uncertain future, Beth also claims "it was more difficult to talk to Clive about specific fears" (Harry page 8) and infers they do not openly discuss certain issues. In addition to their communication style, the family dynamic had shifted as Clive spent the majority of his day at work while Beth continuously cared for Melanie. Although Beth may have felt burdened by being Melanie's main provider, she never mentions any feelings of resentment.

In addition to her husband, Beth also maintained a positive and close relationship with her siblings and parents. She states that her extended family was “integral to our family identity and would prove to be a continuing source of support for us” (Harry pages 43-44). She also discusses her family’s relationship with Melanie, stating “there was not one member of either of our families who would interpret this new member’s life in negative or stigmatizing terms (Harry page 44).

The microsystem of both Beth and Melanie involves plenty of supportive friends and family. According to Bronfenbrenner’s Ecological Theory, these supportive relationships nurture Beth and Melanie while fostering a sense of hope and love. Beth made sure to surround herself and Melanie with positive people who supported and encouraged them along the way.

Interactions with Family and Friends Continued

In regard to friendship, Beth provides an interesting view of her mindset regarding how she chose the supportive people in her life. Beth states, "I think that my idea of supportive at the time was any attitude that seemed to accept unconditionally whatever attitude I displayed at any given moment" (pg. 47). During the first few months, Beth clung to those who had a similar viewpoint, and cast aside those she felt were "unsupportive".

Friends were in integral part of both Beth and Melanie’s life. They both received support from numerous individuals, including Joan, Wendy, Sarah, and Mercedes. Each friend provided Beth with comfort, and assisted Melanie in meeting her goals in a positive way.  As Melanie grew older, she was also able to develop relationships with other children, particularly those at the Immortelle Center and children of friends.

Interactions with Family and Friends Continued

Question 8: Internalizing Habits of Mind

Professionals who choose to work with children with special needs and their family should have the following habits of mind:

*Persisting: Stick to it!– Challenge yourself to find ways to complete your goals when you face difficulty. Don’t give up and remain focused.

*Thinking & Communicating with Clarity and Precision: Be Clear! – Communicate clearly and accurately when speaking or writing. Avoid grammatical errors and over-generalizations.

*Listening with Understanding & Empathy: Understand others! – Attempt to understand another person’s point of view. Listen intently and try to empathize with their perspective.

Internalizing Habits of Mind Continued

*Applying Past Knowledge to New Situations: Use what you learn! – Incorporate existing knowledge and prior experiences in new contexts. Use insight from previous experiences to enhance current situations.

*Think Interdependently: Work together! – Collaborate and work with others in a beneficial situation. Promote team work and team values.

*Remaining Open to Continuous Learning: Learn from experiences! – Be open and honest when unsure. Admit uncertainty and be willing to learn from the experience. 

*Think Flexibly: Look at it another way! – Open yourself up to new ideas. View a variety of perspectives and consider various options. Try to think outside the box.

(Institute for Habits of Mind)