Nothing like Mum's Love Nothing like Mum's Love

19 Oct 2016

Nothing like Mum's Love

Madam Jasmine Lee never thought that she would be a parent to a child with special needs. Her eldest son came into the world strong and healthy, but her life took an unexpected turn after the birth of her daughter, Sarah, who has a rare condition that prevents her from swallowing. 

“With my second pregnancy, I was so determined to do even better. But upon giving birth to Sarah, she was immediately whisked to the Intensive Care Unit. The next thing I knew she was shuttled to another hospital.” Sarah, now 4 years old, has undergone operations for a tracheostomy, where a tube is inserted into her throat to clear mucus and saliva. More recently, she had a feeding tube inserted into her stomach. Sarah is also unable to sit up on her own and has moderate hearing loss.

Navigating this new terrain of parenting a child with special needs can be daunting. With time and the support of other parents with similar caregiving experiences, Jasmine, 31, eventually felt empowered to advocate and change the environment for children with special needs.

She is part of a team of six mothers behind Special Seeds, a digital resource platform that aims to demystify, inform and inspire parents of children with special needs and rare disorders. Founded in 2015, its mission is to enable successful parenting of people with special needs and disabilities for them to reach their fullest potential and seed a more loving and inclusive environment in Singapore.

“As Singapore enters a new era after SG50, we too felt compelled to initiate a new era of active citizenship within the special needs care giving scene,” said Special Seeds Founding Editor Ms Sally Kwek, 40. “Support so far has been very institutionalised and based on diagnosis. We wanted a platform with stronger support that could capture experiences of parents who have been through the journey, so the ones after benefit from it.”

Over the past six months, this initiative has grown into a thriving online community on Facebook reaching out to some 200,000 people. Special Seeds also hopes to throw light on the misconceptions involving children with special needs. Contrary to what some may think, children with special needs are capable of thought despite being minimally verbal. They also need discipline and an education. In addition, it pools together practical advice from professionals like therapists, stories by parents and educates the public on how to get involved and interact with special families. 

“No parent should be left alone to struggle with the uncertainties of their special parenting journey,” said Jasmine. “It’s very different parenting a normal child and a special needs child. I realised it’s not so much about expecting them to reach so-called milestones at a certain age, as experts would tell you. Whatever they can achieve is a milestone in their own right, as they set their own pace.”

Nothing like Mum's Love

Nothing like Mum's Love

Nothing like Mum's Love

Nothing like Mum's Love

Nothing like Mum's Love

Often, new parents of special needs children are thrown into a whole new world of challenges, whether it is coming to terms with their child’s condition or learning and attending to their medical needs. They may also find themselves withdrawing from their usual social circles or having to handle awkward exchanges with friends and strangers.

Webmaster Jayna Tan, 40, whose son has epilepsy, has come to appreciate the little things more. “Before I had him, there was this ideal image of what being a mother is like,” she said. Simple activities like sitting up, flipping over or drinking are seemingly easy for other children, but very complicated for some children with special needs.

Sally, whose nine-year-old daughter has Moebius syndrome, a rare neurological condition that affects the facial muscles and eye movement, recounts that when she first gave birth, her prognosis was like “one death sentence after another.” She believes that children without parents who are empowered, informed and engaged, do not stand a chance. “Don’t be buried in self-pity because there’s one person waiting for you to help, and very often you are probably his or her only chance.”

Although special-needs parenthood has its own set of challenges, in some ways, they are just ordinary parents who happen to have special needs children. Although they’ve been called “Supermums” and other terms of empowerment, the mothers behind Special Seeds agree they are merely answering the call of duty.

Community Manager Mary Heng, 39, who has a daughter with Down Syndrome, believes that only with like-minded parents venturing on the same journey, will there be stronger support to improve the future of their children. She said: “I realised my child cannot have a typical growth experience, but right now I’m more prepared because I have gone through so much more with her, we’re just thankful she’s just still around and whatever we can progress in, we can support her.”

“Our challenges may seem harder but there are mothers around the world whose challenges are nothing less so it’s unnecessary to put families of kids with special needs on a pedestal because it may end up as a kind of segregation,” said Ms Kwek. “All we want is to belong to the community.”

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