Here’s why we’re celebrating World Down Syndrome Day 2020 on 21 March, and what you can do to support this important community initiative!
World Down Syndrome Day 2020, a global event to raise awareness and exemplify the abilities of persons with Down Syndrome, falls on 21 March. In light of the worldwide coronavirus pandemic, it will be celebrated virtually this year with a global Facebook Watch party (unfortunately 2am local time). Here in Singapore, celebrants are encouraged to wear colourful mis-matched socks on the day and to consider making an online donation in support of the Down Syndrome Association of Singapore. The Bicentennial Community Fund will even provide dollar-for-dollar matching on any donations made toward the cause!
Sassy Mama is proud to support this wonderful community initiative, and would like to welcome mama Niamh Daniels to reflect on the journey her family has taken with their 8-year-old daughter Essie, who was born with Down Syndrome here in Singapore (we first met Niamh when she wrote and told us about her helper Vicky’s close relationship with Essie). Niamh also provides tips and a list of handy resources for parents in Singapore whose children have DS. As you’ll see from her beautiful essay, Essie is the embodiment of what it means to make meaningful contributions to her community – and we look forward to seeing what this spirited little girl will accomplish in the years to come!
To mark World Down Syndrome Day I wanted to reflect on the irrational fear that was sparked in our family by the very mention of the condition. I say irrational because, as my husband and I now realize, it was a fear that was without any rooting in actual fact or knowledge.
In the beginning …
Essie was born in 2011 at Gleneagles Hospital. She was to be our ‘expat third’ baby to complete the family. The pregnancy went without a hitch, with not one test showing up any hint of a high risk factor. Essie arrived as planned and day one of her life in the Singapore bubble was a haze of newborn picture perfection.
That bubble popped on day two. A doctor came into the hospital room at about 6am, whilst I was on my own with Essie, to tell me that there were a few indications that Essie may have Down Syndrome. He couldn’t be sure, so blood tests were needed. The lab to do this test was in New Zealand so we had an agonising two day wait for confirmation.
Those two days of being in limbo were awful. The term Down Syndrome (or was it ‘Downs Syndrome’? I had no idea) sparked fear in the pit of my stomach. I felt scared — how would we cope with this new role of both short-term parent and long-term carer? I also felt guilty for my other two children — how could we have burdened them like this?
But in a quiet moment I realised that I had no idea what DS actually was. I knew it meant an extra chromosome was present, but when pressing myself for further knowledge that may be held in some dusty filing cabinet in a corner of my brain, I realised I didn’t really know anything. I had no idea what lay ahead for us; I just sensed a future laced with sorrow.
Life as we know it today …
Fast forward six years and I can say, hand on heart, that those early fears were indeed, completely irrational. They now seem almost ridiculous. I struggle to reconcile how I felt way back then to now. These days I have to constantly reign myself in from being that annoying mother who can’t stop bragging about how special their child is.
If I was asked now what it is like to have a 6-year-old daughter with DS, all I can do is describe Essie to you. Delight is sparked in Essie by the smallest of things, and that delight is huge in its expression. She has been described as having a joie de vivre and I believe that little expression captures her beautifully.
Essie is starting school, she loves to swim, she talks a lot, she loves Paw Patrol and ice cream, she adores her sisters and gives awesome squishes and squeezes. Right about now I can hear the chorus of voices telling me how loving DS children are, but guess what? She is also stubborn and gets angry, slamming doors and shouting at her sisters and telling me she doesn’t like me when she is cross. All very normal 6-year-old behaviour.
What part of Essie’s personality is down to having DS is difficult to quantify. All we know is that we wouldn’t change her perfect self for anything. I also know that we are not unique in having this view.
Three surveys of thousands of parents, siblings and individuals with DS found that 99% of parents loved their child with DS and 97% were proud of them.
These statistics are not surprising to me. What did give me huge food for thought were the results compiled from answers by individuals with DS: 99% were happy with their lives, 97% like who they are and 96% liked how they look.
I do not think anyone reading this would guestimate that the ‘normal’ population would come anywhere close to these happiness levels.
The ancient Greek philosopher Aristotle stated that ‘Happiness is the meaning and the purpose of life, the whole aim and end of human existence.’ If this is the case then the DS community has won every golden ticket out there in life’s great lottery.
The future …
We are not naïve, and we know there will be challenges ahead. The biggest so far has been access to schooling. Sadly, international schools lag far behind many of our home country approaches to accessible, inclusive, mainstream education for children with DS. With much tenacity we have accessed a suitable school place now for Essie and we have an unwavering belief that Essie will obtain qualifications, access work opportunities and be able to live life independently.
Her wish for independence is already burning bright. At present she dresses herself each morning, with some sketchy tooth brushing included, and at night she marches off to the shower telling me ‘Wait there Mummy. I can do it by my own self.’ Essie believed she could, so she did. And our wish is that Essie continues her journey through life with this unshakeably fierce attitude.
To all the Down Syndrome Community in SG, our family wishes you the happiest of happy World Down Syndrome Day.
I believe that the very purpose of life is to be happy – Dalai Lama
Some personal tips for families with a Down Syndrome child living in Singapore:
- If you find out you are carrying a child with DS, or like us, have the news announced after birth, there are numerous sources of information for you to access. I personally contacted the UK Down Syndrome Association and ordered lots of books online. I also encouraged our extended family to join the relevant association in their country as I felt it was helpful for us all to widen our knowledge. Singapore also has a Down Syndrome Association, which is a wonderful resource specific to living here.Finally, there is a Facebook group specifically for special needs families in SG called Singapore Special Needs and Parents, which has over 1,000 members and is a wealth of information.
- Early intervention is key: Occupational therapy can start from the very beginning. The earlier the intervention, the better the outcome. Speech therapy, too, can begin before speech — Essie picked up Makaton signing quickly, which meant before speaking she could begin to communicate her wants and needs (mainly revolving around food!). Both the FB Group and the SG DS Association website are great starting points for research on suitable therapists.
- Studies have shown that DS children make the best progress when they are educated in a mainstream educational environment. Essie has until very recently been attending Swallows and Amazons Early Learning Centre, Turf City and it has been a fabulous experience. Essie has been fully included in this mainstream environment without any additional support. A rare find in Singapore and an absolute gem.