Melody’s Caregiving Journey
The start of Melody’s caregiving journey did not come as a shock to her. Having been a preschool educator, she noticed that her elder son, Josiah, exhibited signs of Attention Deficit Hyperactivity Disorder (ADHD) in his early years. When asked about her son’s condition, she states that she was “well aware of the symptoms, but in denial.” It never dawned on her that she would have a family member with ADHD.
When Josiah started attending a mainstream primary school, Melody could no longer ignore the symptoms. “The teachers sounded alarms. How could I not take note?”
Josiah was eventually diagnosed with ADHD at the age of seven. Medical professionals wanted to put him on Ritalin, but Melody and her husband refused to put Josiah on medication, wary of the side effects and the high rate of heart conditions on his father’s side of the family.
Instead, Melody worked with Josiah’s teachers closely to ensure that he received proper care and services, including behavioural training. This was made possible by Melody’s frequent presence in the school as a parent volunteer, as well as Josiah’s participation in the pilot study for the Learning Support Programme.
In addition, Melody recounts that they spent his primary school years “therapy shopping”, trying out many forms of treatment and therapies in the hopes of improving Josiah’s condition. “Parents try out anything.” Melody recalls that they tried almost everything ranging from a gluten-free diet to applied behavioural analysis. Nothing worked. “We didn’t see him improve.”
Melody felt something was amiss and this view was supported by the school psychologist, who had been working closely with Melody. Their suspicions were proven correct when Josiah, who was 10 by then, was diagnosed with autism after multiple intensive rounds of testing.
It was discovered that Josiah’s ADHD was a secondary condition to his autism. Years spent in a mainstream kindergarten and primary school classroom had provided Josiah with extensive opportunities to socialize with normal children, which made his autism difficult to detect.
Despite the early intervention and confirmed diagnoses, they still faced an uphill climb. Melody describes Josiah as a smart child who was failing exams. When a vacancy opened up at Pathlight School, Melody was faced with the difficult decision of transferring him. The $500 monthly school fee and the prospect of Josiah not adapting to the new school environment concerned her.
She was eventually convinced to transfer him to Pathlight School by the principal of his primary school, who assured her that a vacancy would be reserved for Josiah if Pathlight did not work out to be his ideal school environment.
The transition period into his new school was difficult. Melody remembers it as a “financial nightmare.” Furthermore, Josiah mimicked his classmates’ behaviour and displayed more dramatic symptoms of autism.
This changed when Josiah passed his exams, and confidently declared to his mother, “I am not stupid.” To Melody, this made a big difference, knowing that his self-esteem had taken a hit under the demands of the mainstream curriculum.
Josiah was also presented with an award for being the best in Science. Melody fondly recounts that the feeling of seeing him proudly receive his award onstage was something that “cannot be bought.”
Meeting other parents with special needs children at Pathlight further dissolved her initial worries about the school transfer. There is a high level of rapport among the parents, who learn from each other and with whom she has “bonding and chill-out time” – things that she did not experience with other parents at mainstream schools.
Josiah is now 16. He is older and stronger, and has frequent meltdowns. During these meltdowns, Josiah displays violent behaviour towards his mother and younger brother. Since his father travels overseas for business frequently, Josiah’s parents have been compelled to put him on medication to better manage his condition. Melody escapes to her neighbours’ houses during these meltdowns. Her neighbours are aware of Josiah’s condition, intervening and offering assistance to Melody in her husband’s absence.
A typical day for Melody requires monitoring Josiah’s medication intake and keeping him on schedule at school and at home. Amidst the hustle and bustle of their daily activities, Melody credits her younger son, Japheth, 8, as her “best assistant”.
A few years ago, this would not have been the case. Japheth often bore the brunt of his brother’s anger if a dispute arose when they played together. Melody placed Japheth in childcare to physically separate the brothers, and to ensure that Japheth was as well-cared for as his brother. When Melody’s family moved to Yishun, Melody and her husband were hard-pressed to fetch him to and from the centre in Serangoon.
Melody then decided to home-school the boy, believing that it would be a great source of bonding between mother and son. Melody’s experience as a preschool teacher also ensured that Japheth did not lag behind his peers academically. The greatest blessings, according to Melody, arose from this time.
Other than bonding with his mother, Japheth learned much about his brother’s condition. The boys’ mother was initially skeptical about his presence at Josiah’s medical consultations. However, he has demonstrated great awareness of management strategies for his brother’s condition.
Melody fondly describes Japheth as a precocious role model. Not only does he help Melody with caregiving, but he also helps his classmates who have ADHD. He takes charge of managing his elder brother’s schedule and allowances. Since no other relatives are willing to be caregivers for Josiah, knowing that Japheth will take over caregiving for his brother when they are older comes as a relief to Melody.
Melody and her family have weathered darker days. Caring for Josiah requires constant payments for his medication, consultations and hospitalization. This places a strain on their family’s finances. They had to sell off their flat and move to a smaller one. However, due to a contractual glitch, they were made to vacate the premises before they received the keys to their new flat. She likens this period to “quicksand”, where she and her husband were placed under immense stress and pressure.
Melody admits that she was suicidal at this stage. She confesses that she wanted to kill herself and take her two children along with her; however, she was prevented from doing so by what she firmly believes to be “divine intervention”. Her religious faith was strengthened, and she believes that God intervened to “provide for her family.”
Most recently, she and Josiah were hospitalized for weeks due to various ailments. Josiah was hospitalized for anxiety, obsession, and Parkinson’s symptoms, which she and doctors suspect to be a side effect of one of his medications. Melody had to care for him despite suffering from a persistent fever. Melody was eventually diagnosed with a condition that requires surgery in the upcoming months.
Despite the obstacles in their family life, Melody remains firmly tenacious, resourceful and upbeat. Her professional experience as an environmental education officer has taught her to be thrifty with using electricity and water, which helps their family save on their monthly utilities.
She also persistently reminds herself to view problems not for what they entail, but as challenges to be solved. It is through this mindset that Melody engages these challenges, allowing her to feel “empowered” and a “winner” when challenges are overcome.
“I’m still surviving, and I will be Josiah’s caregiver for as long as I am strong and physically able.”
Johannes Aster Rubiano
The views expressed in this paper are those of the author(s) and do not necessarily represent the views of the NLM Family Foundation.