Having a child changes your life in many ways. Among others, it teaches you things about yourself that you never knew. In addition, you discover yourself capable of things you never expected to be able to do. However, when you have a child with special needs, like Down syndrome, these lessons can be hard earned.
For instance, Stella Fan, 39, found the helplessness and sense of grief over the loss of the ‘typical child’ she expected overwhelming at first. Eventually, she managed to overcome these feelings. “I realised that, as a parent, my job is to provide what my child needs, and that is sufficient, and that is exactly what I signed up for. My life has changed, I’ve become a mother,” she says.
Like Stella, Andrea and Grace are mums of children with Down syndrome. They tell us what they have learnt from parenting their children, and the impact that their child with Down syndrome has had on their lives.
The mums & their children with Down syndrome
Andrea Tan, 37, is an HR consultant and mum to three-year-old Eleanor Li, who is curious, eager to learn, communicative, and loves food: “What makes Eleanor special is her ability to observe, listen, and respond (in her own way!)”.
Stella Fan, 39, is a Senior Regional EHS Manager at Microsoft. Her nine-year-old son Callum Wong “loves reading, singing and swimming, his friends, and people in general”.
Sales executive Grace Lee, 40, is mum to eight-year-old Xyrene Sng, whom she describes as “a very happy and cheerful child. She brings so much joy to the family and because of her, our family bond is stronger”.
1. Your life is changed – in a good way
Andrea went from full-time to part-time work so that she could spend time with her daughter, Eleanor, as well as her older daughter, Charlotte. “I never expected to be a stay-at-home mum and always assumed I would continue working full time post-kids,” she says. “It’s a blessing that I was able to have the option of working part time after Eleanor’s birth. Hence I now get to spend more time with both of my daughters.”
2. You learn to have faith in your child with Down syndrome
Andrea and her husband are optimistic about Eleanor’s future, and have high aspirations for her. While they may sometimes feel that Eleanor is not meeting her ‘milestones’, they have confidence and faith in their child. “We don’t set a limit on her ability and know that with the attention, time and investment, she will get there,” Andrea shares. “We are also very lucky that we have sufficient resources and time to invest in our children’s education and future.”
3. You slow down and appreciate every moment
Mother of three Grace admits that every child’s milestone is different. She reveals that she “always used to push them (her two older children who are in their teens now) to be as good as their peers”. However, after Xyrene was born, Grace’s perspective changed.
“Every milestone for her is a celebration for us. We learnt to slow down our footsteps to enjoy her growing stages.”
4. You discover more about yourself
Every parent’s life changes when a child is born. For Stella, the helplessness and sense of grief over the loss of the ‘typical child’ she expected was overwhelming at first. While those feelings come back every time she faces difficulties, she has found inner reserves of strength within herself. “I know that the path Callum is going to take will be different from most kids,” she says.
5. You learn that every child is uniquely special
“Taking care of Callum and meeting his needs is challenging as he is unable to understand certain complex concepts, and he is limited by his ability to convey his message well verbally,” Stella shares. “However, he is so lovable, and he forgives easily. He is easily satisfied, and is always willing to share if you ask nicely. So if special has the same meaning as unique, then he is definitely quite special.”
6. You do not take things for granted
For Andrea, having a child with Down syndrome has made her rethink her parenting approach: “Having a child with Down Syndrome has made me re-learn and re-think not to take things for granted. In addition I have learnt that as a parent, I am enough for my child. I will be able to find the love and capacity to nurture her and to grow with her.”
7. You grow stronger as a person
Grace reveals that having a child with Down syndrome made her realise that love is without boundaries. More importantly, she learnt to harness her inner strength to do what needed to be done.
“When Xyrene was born, I was very devastated, and cried everyday. But it came to a point where I told myself that I need to be strong for her and for myself.
That is when I started doing research, and found her a place in the AWWA School so that she could start her intervention class as early as possible.”
8. Siblings of children with Down syndrome learn too
It’s not just parents whose lives are changed when a child has Down syndrome; siblings also have to adjust. Callum’s younger brother Asher attended the same pre-school as him, where there were other children with different learning needs. “Until recently, my younger son thought that every family had a child with special needs. It was interesting to see this version of special needs through his eyes,” Stella says.
“He understands that there are classmates who need more help than others to feel comfortable, to concentrate in class, to speak clearly, to socialise. Because of this, he has accepted that some people just need a different kind of help. Hence he has become more accommodating towards others, and is exceptionally helpful to younger kids.”
9. Social perceptions have changed
In recent years, perceptions of Down syndrome have changed and there is more awareness of the condition. Andrea feels that the prognosis used to be “a lot more grim” while Grace feels that people tend to be more open to and accepting of children with Down syndrome now. “My daughter Xyrene is currently taking drum lessons at Down Syndrome Association (Singapore) and at Drum Prodigy. Whenever they have a show, the audience seems surprised that the children with Down syndrome are performing well.”
10. Kids with Down syndrome are really not that different
One thing all three mums agree on and want everyone to know is that a child who has Down syndrome is just like any other child. “Down syndrome really isn’t as bad as what the medical literature tells you,” Andrea assures.
“Children with Down syndrome may be delayed in a few areas such as language and mobility, but it’s just a slight delay and with the right amount of support, love and intervention, the gap can definitely be closed.
My daughter Eleanor will teach you to be a lot more patient, loving, and attentive to small details, and to not take anything for granted when it comes to parenting.”
Stella adds, “While it may not be easy to understand a person with Down syndrome initially, if you make the effort to do so, you may have found yourself a friend for life.”
Celebrate World Down Syndrome Day 2020
People with Down syndrome need the same things that most of us need, like friends, a sense of purpose, a means of expression, and to be respected. Moreover, like us, they have likes and dislikes, and won’t hesitate to make them known. Similarly, they want to feel accepted and heard, says Stella.
Having a child with Down syndrome has changed and inspired Stella, Andrea, and Grace to become better mothers than they thought they could be. Join in and celebrate them, their children, as well as every person with Down syndrome, and those who support people with it, on World Down Syndrome Day this 21 March 2020.
You can do that by wearing colourful mismatched socks on World Down Syndrome Day to spark a conversation and tell others about Down syndrome, donate to the Down syndrome Association, or volunteer with it.
View this post on Instagram
#ROCKYOURSOCKS FOR WORLD DOWN SYNDROME DAY 🎈 Six more days to World Down Syndrome Day! Celebrate with us, wear your colourful mismatched socks out 🧦We want to arouse curiousity, spark conversations and remind people that differences are beautiful too. Together, let us journey alongside persons with Down syndrome to show our support. ❤️💙❤️ Make a choice, rock your socks! 🧦 💌: bit.ly/WDSDWeDecide P.S. If you haven’t gotten your socks yet, head over to bit.ly/rockyoursocks to grab yours today. @happybunchsg will be giving away $25 store credits with a minimum purchase of two pairs of socks this week (limited to the first 10 purchases)! 💐 #WorldDownSyndromeDay #WDSDSG2020 #WeDecide #Singapore #Downsyndrome
#LotsOfSocks #WorldDownSyndromeDay #WDSD20