For parents of children with special needs, their support systems mean the world to them. These parents share who have shaped their journeys and what keeps them going during tough times
For many parents, a Down syndrome diagnosis often comes with one heartbreaking question: “Are you sure you want to keep it?” As a parent and neighbour to a pair of twins with Down syndrome, it was hard for me to hear that this is common practice when I spoke to the parents below for this interview. I can only imagine how much more heartbreaking and scary it must have been for them as parents of children with Down syndrome. Yet, despite the fears and challenges, these three parents we spoke to said “Yes” — choosing love, hope and unwavering support for their children despite the odds. This World Down Syndrome Day (21 March), we celebrate their journeys through the lens of the support systems that helped them thrive.
What is Down Syndrome?
Think you know all about Down syndrome? It is World Down Syndrome Day, so we’re here to bust some of the commonly held myths about Down syndrome.
Myth: Down syndrome comes from the parents. They must have done something wrong or did not do something right.
Fact: Down syndrome cannot be inherited and it’s not caused by anything the parents did or didn’t do. Down syndrome is caused by a random, chromosomal anomaly that occurs during cell division where the person gets an extra copy of chromosome 21. The additional genetic material is what alters the developmental process.
Myth: Down syndrome only affects certain races, genders, or socioeconomic groups.
Fact: Down syndrome happens across all populations, regardless of race, gender, or social background. It is estimated to affect one in 1,000 live births worldwide. Risk does increase with maternal age (especially after 35), but it can also happen in pregnancies at any age.
Myth: People with Down syndrome cannot live long or healthy lives.
Fact: Although they are more prone to certain health conditions such as heart defects, hearing loss, and respiratory issues, with proper medical care and support, many people with Down syndrome go on to hold jobs, find love, have hobbies, leading full and healthy lives.
Myth: People with Down syndrome cannot learn or be independent.
Fact: With early intervention, education, and proper support, people with Down syndrome can learn, work, and live independently like everyone else.
Myth: There is nothing we can do to help people with Down syndrome.
Fact: Your support makes a difference. Every social inclusion, awareness, and outreach helps as much as professional support systems within the community. Every support is a step towards helping people with Down syndrome thrive.
Belinda and Zaccheus’s story: A tripod of support
Stay-at-home mum Belinda was heartbroken when the doctor confirmed the chromosomal anomaly during her pregnancy. Faced with fear and uncertainty, she turned to social media as a source of hope and resource. With other families sharing their experiences with Down syndrome online, Belinda felt a glimmer of hope; knowing that with appropriate care and support, her son Zaccheus can lead a normal life – a far cry from the doom and gloom picture painted on the internet.
Six months into the journey, Belinda shares, “With every good support system, I always imagine it to be a tripod. For us, there are three main supports we look out for – professional support, family support and social support.”
She receives professional support from Zaccheus’ doctors, cardiologists, and paediatrician who regularly monitor his health. Additionally, she has learnt so much about her son’s condition from the teachers at the Down Syndrome Association (DSA). Knowing what to expect and what to do empowers her to be a better caregiver. One of her biggest gains is connecting with other parents in real life, seeing how families in similar situations thrive encourages her further.
Her husband and daughter form the family support in their life, and their deep love for Zaccheus embraces him for who he is. Friends and society form the social support, where perceptions and awareness (or lack of) play a big role. “Most of the time, people act out of assumption… They say certain things or act a certain way because they don’t know but when they do, they realise it’s not as scary or horrifying,” Belinda quips.
Perhaps it’s time we learn more.
Frankie and Eliot’s story: Bridging gaps in the school system for a child with Down syndrome
Dad of two Frankie works as a Strategic Communications Manager in a church and one of their first sources of support came from his workplace. His pastor connected him with parents of an adult with Down syndrome, who shared firsthand experiences about raising a child with Down syndrome in Singapore. Besides the mental preparation, that meeting also helped the couple feel more confident in their decision to care for their son, Eliot, who has Down syndrome.
He credits DSA’s Infant Toddler Programme for providing crucial early intervention which helped Eliot build foundational skills. In addition to informational talks, the programme also taught them exercises to strengthen Eliot’s core muscles, improve his focus, and to engage with different textures. “That’s when he really learned things… that’s where he actually learned to walk!” Frankie shares excitedly.
With supportive teachers and classmates along the way, Eliot progressed well, both academically and socially, through mainstream preschool and primary school education. He is now in Primary 2, thanks to DSA’s Integration Facilitation Support Programme which helped him prepare for the transition from preschool to primary school. Although the support system seems pretty robust, looking ahead, Frankie sees a gap in the education system. He notes that high-functioning children with Down syndrome may have limited education options. Schools for special needs may not cater to their academic potential, while mainstream schools may move faster than they are adept to learn; there’s no in-between option that meets their needs. What’s next for Eliot after Primary school? That’s Frankie’s current worry.
Moses and Enoch’s story: The power of early intervention and timely support
From the ages of six months to six years years old, young Enoch had his limbs pulled every week in massage sessions. Even though his cries filled the room during every session, his parents gritted their teeth and placed full faith in the therapist, without knowing if it’ll work. Years later, Enoch’s dad, Moses, noticed his peers struggling with fine motor skills activities like buttoning their shirts and tying their shoelaces – actions that Enoch performed with ease. Only then did he realise the positive effects of all those years of massage.
Alongside his work as the director of a funeral parlour, Moses has always made time to bring Enoch to attend sport classes and also trains him to travel independently to and from his classes at DSA. Enoch is now 23 years old and can probably beat you at bowling or even score a turkey (three strikes in a row) before you do! He picked up the sport at the Special Olympics Young Athlete programme, which teaches basic sports skills like running, kicking, and throwing to children aged two to seven, with or without intellectual disability. It was then that bowling became a big part of his life.
With Enoch’s progress, Moses believes in early intervention and timely support, but he also feels a dilemma. “There is no masterplan for most families… We know we need early intervention, the question is what type of intervention, where to get it, and which type comes first?” He shares.
How can you be involved this Down Syndrome Awareness Day?
Ways to expose our kids to children with different needs
As part of the wider society, let’s stay curious and open about people with Down syndrome. Read up and learn all about Down syndrome so you can better explain the condition to your children. Or tell them all about World Down Syndrome day!
Create opportunities to play and interact with children with special needs. This can look like organising play dates or even having some fun at the Special Olympics Young Athlete programme. Besides physical activity, children of varying abilities have a chance to mingle and learn together. With better understanding, comes better acceptance and better support from the community.
World Down Syndrome Day is the day to rock your socks!
Under the microscope, chromosomes look like socks! And since Down syndrome is caused by the extra chromosome, people around the world put on mismatched socks to raise awareness. On World Down Syndrome Day on 21 March, put on your most colourful, mismatched socks and spread the word.
Donate to the Down Syndrome Association of Singapore
Started by parents for parents of children with Down syndrome, DSA is a formally registered charity which supports families and people with Down syndrome through targeted programs and essential information. With the aim of helping people with Down syndrome lead a full life, DSA offers everything from pre-natal support and early intervention, to education enhancement and training for independence, including financial assistance to lower income families. You can do your part by making a donation or shopping the range of art and merchandise crafted by artisans with Down syndrome. All proceeds go to supporting the needs of the Down syndrome community in Singapore.
Every child deserves the chance to thrive; when you say “yes” to inclusivity and compassion, you say “yes” to a world where stronger support systems empower children with Down syndrome to reach their full potential.
A big thank you to DSA for connecting us with these families to share their stories. Happy World Down Syndrome Day!
