World Down Syndrome Day 2019 has come and gone, and with it, Amos’ 6th birthday. It feels unreal. We are in a manic phase of our lives where we couldn’t tell the days from the weeks; weeks from the months; months from the years. The boys have grown. Joel’s hand is now almost as large as his Mummy’s. Amos is turning into a loving, cuddly 6 year-old; lively with a tenacious spirit, who insists on wearing his socks and shoes himself, who gets embarrassed when praised, who throws tantrums and totters out of bed on school days with closed eyes and tousled hair.
Along the way we—as parents—grow with him. And all these wouldn’t have been if we’d allowed Amos to come under a pair of forceps. Being in Singapore we are blessed in many ways that help us follow through this decision we’ve made.
Not long ago Amos was prancing about at the waiting area of the ENT clinic when a kindly lady approached us. She had noticed Amos, who had broken free of mummy’s grasp and gone around unabashedly performing his song and dance. A second later the number ticker jumped. We were up to see the doctor. Still the lady intercepted us and introduced herself, her English halting. The nurse called Amos’ name. The lady persisted, and asked if Amos has Down syndrome.
“Yes,” we told her, and then as politely as we could, “Why do you ask?”
Visibly relieved, she told us her son has Down syndrome too. We looked around and found him—a sprightly boy, 6 or 7 years old, darting about the seats kicking his plastic spectacles and skittering it across the floor like a hockey puck. His father fumed. His older brother, a teenager, would pick it up for him and he’d send it across the floor again.
Back to the lady: we reckoned it was solidarity that attracted her to us. Amos might have been the first kid with Down syndrome she encountered since she arrived. But we couldn’t afford a chat. The nurse was calling. We bade a hasty goodbye and parted.
That day was supposed to be routine. We exited the doctor’s office, turned to leave, and there they were—the lady and her entire family, on the row of seats just down the corridor, smiling genially and waiting for us.
Bravely they approached, revealing no trace of hesitation whatsoever, and once within audible range unleashed smiles and a fusillade of questions—Amos’ age, his condition, complications, schooling options, the kind of environment for children with special needs that Singapore offered, how on earth we got Amos to wear his spectacles when their little brother was busy kicking his.
Gladly, we shared, and found out that they were from Bangladesh on a 15-day trip to visit the best doctors in Singapore they had found online and to find out the best opportunities available for their young child. They desperately needed answers and rightly so because they cared.
We asked if they had any support back home in Bangladesh, and our hearts soured at the precocious reply the teenage son gave. “Back home,” he said, with a trace of regret, “no one likes people like him (little brother).”
We felt their loneliness and more. The hospitals back home offered limited specialised check-ups or treatments, he said. There were hardly any substantial aid programmes or subsidies. They are feeling their way through in a strange, new world with no guides or signposts. The parents had only the solidarity of the family, fortified by their dauntless spirits and insistence to provide the best for their child, regardless of how different he might be. The conversation had been very humbling. For it was them who had encouraged us instead.
It reminded us to count our blessings—to really count them. It compelled us to survey the landscape we have; the green pastures that others saw but that which we had been blind to. Broadly we took stock of recent initiatives, and were immensely heartened:
More Subsidies
In Jan 2019, the government announced it will channel $60 million a year - 30 per cent more than $45 million currently - into early intervention for children with special needs.
Enabling Masterplan 2017-2021: Caring Nation, Inclusive Society
The National Council of Social Services (NCSS) have a five-year roadmap that guides the building of a more inclusive society. The 3rd Enabling Masterplan (2017-2021) has recommendations to improve the quality of life of persons with disabilities, support for caregivers, and build a caring and inclusive community. See it here!
Development Support (DS) & Learning Support (LS)
From July 2019, the Ministry of Social and Family Development will be progressively rolling out more customised Early Intervention (EI) services and making them more affordable. They will provide support and intervention in areas such as speech and language, social skills, motor skills, behaviour and literacy, and equip pre-school children with developmentally appropriate skills to optimise their developmental outcomes. Find out more here!
EIPIC under 2s
Early intervention (EI) centres will move away from the one-size-fits-all EIPIC model. Instead, they will offer enhanced EI programmes that are better tailored to the varied needs of children as they develop over time. Under the new EIPIC Under-2s programme, all children under two years old enrolled in EIPIC will receive more targeted intervention. The EIPIC Under-2s programme requires children to be accompanied by their parents/caregivers, who will receive training to carry out intervention strategies in the child’s daily routines at home. Find out more here!
Integrated Child Care Programme (ICCP)
ICCP is an inclusive child care programme for children with mild special needs. Providing these children with a natural learning environment alongside mainstream peers will help prepare them for future entry into mainstream primary education. Find out more here!
Care Centre for Children with Special Needs
The MINDS Woodlands Gardens School has, in Jan 2019, opened a care centre to help caregivers - usually working parents and housewives - take care of their charges. Teachers will coach the students with homework, while taking them through their daily tasks. This is a social milestone in allowing parents and caregivers to fulfil their day jobs, take a breather and relieve stress.
Foreign Domestic Worker Grant
An assistance scheme that is intended to help families who need to hire a FDW to care for their loved ones with moderate to severe disabilities. Eligible families may receive a monthly grant payment of $120. Find out more here!
Foreign Domestic Worker Levy Concession For Persons With Disabilities
A scheme that lowers the levy from a $265 to just $60 for eligible families employing full-time Foreign Domestic Workers to look after their loved ones with disabilities. Find out more here!
Most of these initiatives are probably meant for Singaporeans and PRs. It would be wonderful if the Bangladeshi family was one of us. But they weren’t, not yet at least. As we parted for the last time that day we could only wish them well. We share a common bond, as we would with many others, one that transcends races and nationalities. And once in a while a drifting spark from their fiery, undaunted spirit would rekindle ours, and we would go on again.
We celebrate World Down Syndrome Day 2019 and we also celebrate parental love. So, for the new parents out there who might be facing the daunting decision, we’d like you to know that you aren’t alone. Take the leap of faith, give the child a chance, and join us in this remarkable journey.
Photo credit: Nezemnayavia Foter.com