Reality of living with Down syndrome
Living with Down Syndrome
By Coen Lammers
Having a daughter with Down syndrome is possibly the best thing that has happened to our family – as well as the most challenging.
Watching Bella flourish for the past 16 years, we know that living with Down syndrome is not a curse or punishment, but a terrific, enriching adventure filled with joy and surprises, as well as the odd road bumps.
Last week’s storylines on Shortland Street created a storm in parts of the Down Syndrome community because they depict old-fashioned, ignorant ideas around the disability and have nothing to do with our day-to-day experiences in a modern, inclusive New Zealand society.
Bella’s birth was a shock and surprise to the family because we had decided not to have any pre-natal screening test.
My wife and her family took a while to come to terms with this new reality, but I had grown up with an uncle with Down syndrome and thought I knew what to expect.
What I did not realise back in 2001 was the incredible impact our wonderful, multi-talented, sociable and loving daughter would have on our entire wider community.
Her outgoing, chatty and cheeky personality has turned her into a mini-celebrity in our small town and most people only know us as Bella’s mum, dad or brothers.
We are fortunate that Bella was born in a marvelous, inclusive New Zealand society that encourages and practices mainstreaming in education and positive community participation by disabled people.
Like many other countries though, we are currently grappling with the ethical debate around improved pre-natal screening, which now gives pregnant women near conclusive evidence to determine if their baby will have Down syndrome.
The New Zealand Down Syndrome Association does not challenge any woman’s right to choose whether she wants to abort her pregnancy, but there is a desperate need for more balanced information for expecting parents to make a well-informed decision.
Currently, the advice to pregnant mothers is purely medical and based on potential medical complications that MIGHT happen. On top of the initial shock of a positive screening, young parents are exposed to blatant fear tactics, so it is not surprising that many of them opt to terminate.
Unfortunately, our Government does not keep any statistics on how many women have a positive test for Down syndrome and what percentage decides to abort, but in several countries a deliberate campaign by governments and medical officials to eliminate Down syndrome from their society has produced sobering results.
Iceland has nearly reached a 100% termination rate, while in 2017 only four births with Down syndrome were recorded in Denmark.
Before the New Zealand medical community quietly eliminates one section of our society, it is vital for our country to have a national debate on the value we put on people with Down syndrome, or any other disability that can be screened.
The crystal-ball gazing by doctors, who may never have met anyone with Down syndrome, is frustrating to say the least.
Doctors don’t tell other expecting parents that their child might be obese, may have problems with drugs or alcohol, may have behavioural or learning issues, will cost them hundreds of thousands of dollars and pretty much ruin their carefree life, so why are they so insistent on presenting a list of doom for children with Down syndrome.
Yes, children with Down syndrome have a higher chance of heart complications, but these are mostly fixed in the first months of lives.
Our Bella has coeliac disease like many other Kiwi kids, and has been in hospital with pneumonia, but the list of doom never materialised.
In fact, we probably have visited the doctor more often with her two brothers and Bella is physically the staunchest and most resilient one of our three children.
When we dragged our family around Europe, the boys would walk and moan around Rome, Paris or Barcelona, while Bella would just get on with it, inspired by the next gelato shop around the corner.
I really wish some of the “experts” providing advice to vulnerable pregnant women would spent a few hours with our Bella.
If they would see how she interacts with fellow students at her high school, disabled or not, will show them how wonderfully integrated she is in that community.
They would also see the multitude of life skills Bella is unknowingly teaching her peers, around kindness, patience, accepting and appreciating diversity, and helping others.
Bella would also be proud to take them to her part-time job at Coffee Culture where she serves coffees to her local community two afternoons each week and is a much loved and valued workmate.
She would show them her swimming medals from the latest National Special Olympics, or the video from her Tinkerbell dance solo in the latest stage performance of Jolt, a high-profile dance company for mixed ability dancers.
Or she would take them along to the barista course she is currently completing under guidance of one of New Zealand’s leading baristas.
Between her school, dancing, sports and work you would struggle to find any Kiwi 16-year-old girls juggling such an exciting life.
Our oldest child is a wonderful role model for her younger brothers on how to embrace life and make the most out of it.
We are proud of what Bella has achieved, but we’d be the first to admit that the journey has not always been easy, with numerous battles with officials, teachers, principals and agencies to give her the best opportunities.
But saying that, most parents face similar battles for their children, whether they are disabled or not.
And that is the point that many medical experts miss.
People with Down syndrome are people like all of us with an endless variety of personalities and passions, with different strengths and weaknesses.
Next time you meet a person with Down syndrome, maybe try to get to know the person and look beyond the disability.
You might be surprised to find out how interesting his or her life is, filled with dreams. Just like the rest of us.
Coen Lammers is a communications advisor, writer and editor of CHAT 21, the New Zealand Down Syndrome Association magazine.
