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.”