When Hajah Marinah binti Haji Abdul Hadi welcomed her first daughter, Farhanah binti Haji Salleh, in 2001 and learnt that she had Down syndrome, she found it difficult to pinpoint the emotions she experienced.
“To be honest, I was in shock; everything turned into a blur. A whirlwind of thoughts raced through my mind: Can I care for this child? Can I provide for her? Can I keep her safe?” shared the 58-year-old.
Lacking prior knowledge or interactions with individuals with Down syndrome at the time, Hajah Marinah found the experience overwhelmingly emotional, compounded by feelings of guilt and shame.
She noted that societal awareness of the condition was minimal at the time, and that there was still a widespread belief that individuals with Down syndrome were inherently incapable of achieving significant milestones.
This perception, particularly when echoed by the healthcare professional delivering her daughter’s diagnosis, hit Hajah Marinah hard.
“When the doctor announced Farhanah’s diagnosis, he also began to list all the things Farhanah would supposedly never be able to do. It felt as though he was saying she wouldn’t be capable of any independence.”
Fortunately, there is now a broader understanding of the condition, and healthcare professionals handle such diagnoses with much more care and empathy, she added.
“Despite what the doctor said, Farhanah was able to walk at the age of two and started talking before she turned three.”
While awareness of Down syndrome and other disabilities has grown over the years, she believed the Sultanate still has significant progress to make in creating an environment where individuals like Farhanah can truly thrive.
“This is precisely why we established the Down Syndrome Association (ABLE) – to serve as a lifeline for parents and relatives of individuals with Down syndrome.”
Given the persistent stigma surrounding the condition, Hajah Marinah, who serves as a secretary for ABLE and is one of its founding members, explained that some parents still find it challenging to cope with their child’s diagnosis.
“Being part of the association, I myself have gone through this. We get to help parents of new members cope and go through acceptance, if there are parents who are in crisis and need advice.
“We are here to provide that – a support network to share experiences and how we handle our emotions. We’re here to tell these parents that they are not alone, that there is a whole community going through the same things.”
Among the objectives of ABLE are to protect members with down syndrome and their families from exploitation and abuse, provide comprehensive support in social, training, educational, and psychological aspects (STEP), and offer knowledge and information to empower informed decision-making among its members.
Hajah Marinah, who left her job in the finance private sector to fully care for her daughter Farhanah, also shared how some members still experience being outcast by their extended families.
This belief still persists among some members of the public, she revealed, who see the genetic disorder as the “fault” of the parents, viewing it as a divine punishment for a past sin.
She emphasised that such mindsets are highly damaging, affecting not only the mental health of the parents and relatives of individuals with Down syndrome but also hindering progress in their welfare.
“Beliefs like this sadly lead parents to avoid bringing their child with Down syndrome for proper health appointments or even out in public, which is a tragic reality.”
Hajah Marinah stressed the crucial role of family support in the welfare of individuals with Down syndrome, highlighting the complexities of caring for someone like her daughter, Farhanah.
She recounted the challenges faced before the establishment of ABLE in 2012, when resources for effective care were scarce.
It took immense effort to navigate the complexities and find the right care and education for individuals like Farhanah.
Down syndrome is known for physical growth delays and mild to moderate intellectual disability, requiring physical therapy to address many related issues.
Hajah Marinah also noted that increased physical activity opens up opportunities for individuals like Farhanah to participate more in daily life.
Despite the challenges, she shared that Farhanah, now 22, can manage everyday tasks like cleaning her room and doing her laundry, highlighting her determination and ability to engage in ordinary activities.
The mother of two however believed that more needs to be done, especially in the education system, for individuals with Down syndrome, particularly those like her daughter Farhanah who have graduated from school.
She expressed concerns about her daughter’s future, particularly regarding how Farhanah will navigate life once neither she nor her husband are around.
Hajah Marinah expressed her hopes for more employment opportunities for people with down syndrome, not just for earning a living but for achieving independence and the ability to navigate the world themselves.
“While it may present challenges, they deserve opportunities that will help them lead fulfilling lives.”
She emphasised once more the importance for parents of individuals with Down syndrome to seek organisations like ABLE for help, offering reassurance that they don’t have to navigate these challenges alone.
Hajah Marinah said that they stand ready to provide guidance and assistance, underscoring the pivotal role of support from society and family as the foremost source of solace and aid.
“When I first learnt of Farhanah’s diagnosis, I was in shock and felt ill-equipped to care for her. However, during that challenging time, my family, friends and husband rallied around me, providing unwavering support and strength.
“It’s moments like these that remind me of the precious gift Farhanah is to us. We care for her not out of obligation, but out of love and a desire to ensure her well-being. As parents, all we can hope for is to do what is best for our child.”
ABLE was established in 2012 and currently has more than 130 registered members.
Today,March 21 marks World Down Syndrome Day, a global awareness day officially observed by the United Nations since 2012. The date was selected to signify the uniqueness of the triplication (trisomy) of the 21st chromosome which causes down syndrome. The theme this year is ‘End the Stereotypes’. – Wardi Wasil
