It’s 21st March – Happy World Down’s Syndrome Day! #WDSD18
Now, I’m guessing you may not fully understand what Down’s Syndrome is and isn’t, let alone know it was #WDSD18. It’s something that has been covered a lot in the press over the last few years with the focus being on pregnancy screening. Unfortunately, not much coverage has focused on raising awareness or educating people on what Down’s Syndrome is.
In my own family, when we were diagnosed during pregnancy, all we had to go on was this big devastating label that told us our child had no hope. This was then further compounded by the NHS attitude to the diagnosis – the implied ‘sentence’.
Like many parents, our first instinct was to protect our baby. We don’t want to hear the odds: if he has a chance, we’re fighting for him. We have never looked back.
Fortunately for us there was 21&Co with an exceptional team of volunteers lead by Tatty Bowman and Louise Beattie. This is an organisation of a few parents who have children and still find the time to run speech and language classes, offer council, advice and organise fun days. They do this every day, every week, all year for hundreds of parents and their kids when they have nowhere else to turn.
They help people find perspective and gain a degree of control with this vast spectrum that is Down’s Syndrome. They help people understand that it’s not a disease but the addition of an extra chromosome – number 21. And ultimately, they teach that Down’s Syndrome is different in every case: it’s as varied and different as any child is from another. And the lives that these kids lead are as individual as they are: some are at university, some setting up businesses and some with a wider range of things to contend with.
For my wife and I we have Jude, big brother to Caolán. In his 3’s he’s a little rascal; he’s mischievous and hugely curious. He loves nursery, his brother, dancing and is nuts about books. For us he’s simply a little boy, our Judalicious!
On World Down’s Syndrome day please challenge your assumptions and do your part to support diversity and inclusivity.
by Jason Talbot