My reflection on World Down Syndrome Day 2018.
We are just like you
Every day is different with Zigi in the mix. Some mornings he will delight in getting ready for school all by himself, other days he declares “no school” as if he has authority to determine the outcome of the day! Then we know we are in for the hard yards. The cajoling that follows, viewed from the outside world, would be likely comical. “Happy, happy, joy, joy” voice tones are used with accompanying reminders about the friends he will see, or the fun activities that are on offer for the day to entice him out of his mood and towards the front door. Usually a myriad of items are packed (then unpacked, then re-packed) into his school bag for show and tell. His teacher is used to it now.
Barbie (aka Rapunzel) requires dressing (which involves taking out EVERY doll outfit known to man, then “eenie, meenie, miny, mohing” until the one that happens to take Zigi’s fancy THAT DAY is selected). Zigi will then usually agree to put his own clothes on, but even that can involve a change of shoes when the ones fitted suddenly are “not working”. Bribery is definitely resorted to.
If we decide to attempt walking the 500m to school, then that simple step in the routine can seem like a half day hike! Sometimes every distraction means that we take the “scenic route” collecting flowers, rocks and leaves as we go. Other times it means running from tree to tree hiding then finding, first mummy, then daddy, then Teja, then Barbie, then Zigi – then repeat. We must look like crazies some days!
Other days it can involve a sudden halt, followed by the dreaded sit down that usually happens slap dab in the middle of a footpath. Then the “happy, happy, joy, joy” tones are again deployed (while internally screaming a few choice cuss words), bribery ensues and dad often ends up piggy backing Zigi all the way to school.
Zigi clearly has us wrapped around his little finger! Judge us all you like – but our goal is to get him to school in a happy frame of mind – whatever that takes!
Some days we drive the 500m. It is just easier.
By the time we make it to school and get Zigi and Teja into class, we walk out feeling like we have run a marathon and it isn’t even 9am!! I bet all parents relate to this feeling some days!!
On the flipside Zigi has a beautiful nature. He will often sidle up to me at the end of a long day, gently rub my back, whisper in my ear “love you mummy”, then hold his hands up in a heart shape before coming in for his signature full body “koala bear” hug. He has the ministry of hugs. He has brought grown men to tears with his well-timed embraces.
He also has a wicked sense of humour and his laugh is just contagious! He loves to dance, but he can’t sing to save himself! Although he does try hard and manages a tune with Happy Birthday and Jingle Bells. He loves to help around the house – and if you ever need a table set – Zigi is your man!
Down syndrome is not a disease. Zigi does not suffer from it, nor does he have a “mild case”.
He is not a “Downs kid” or a “Downsy”. He is a kid with Down syndrome. He is not defined by an extra chromosome, so please don’t you define him that way.
He sees life just like your child does. He sees differences in others, he has great friends, but at times he feels alone.
He chucks tantrums and he is certainly not “always happy” as so many well-meaning souls tell us. He drives us bananas daily, and then the next minute he melts our hearts.
He has a lot of love to give but he needs love and friendship and companionship in return – the same as anyone.
Please don’t tell us that we are “an inspiration” or that we are “special parents to have such a special child”. We are parents of two kids, just like many of you (unless you are one of crazy ones who chose to be outnumbered by your offsrping!) We take each day as it comes and do our best – just like you do. Sure, we have hard days – but don’t we all? Yes, we celebrate good days – but aren’t the good things in life worth celebrating?
Please don’t tell us that you “couldn’t do what we do” – you could, because we do. You just do. We are not “putting on a brave face” or “making the best of it”. It is just life. Everyone has just one. It will be full of ups and downs and all we can each do, is fix our eyes on the ups not the downs.
Today, 21 March is World Down Syndrome Day. On this day, people all around the world celebrate the lives and achievements of people with Down syndrome, creating a global voice, advocating for the rights, inclusion and wellbeing of people with Down syndrome.
The purpose of this day for us is to share a snippet of Zigi’s life with you – the tedious bits and the amazing bits – to show you that Zigi’s life is not that different to the life of any other 8 year old.
To remind you, that we are all “unique” and that “normal” is a myth.
We all have differences, yet we don’t want our differences pitied, or viewed in a negative light. We all have “impairments”, yet we don’t want those things to be the focus of our daily lives. All we want for, is to journey this life as best we can, with connection, with purpose and with equality. That is not too much to ask.
It is not about “unseeing” disability in a person but more about seeing it as an integral part of a person, then investing time to understand, learning to embrace all the differences and being open to the lessons we will learn from those who see the world differently.
Small changes make a big difference
On the day where we celebrate Zigi along with a worldwide community who know firsthand how kids and adults alike with Down syndrome make the world a better place – I ask you to reflect on what small change you can make, or teach your kids to make, so the world is a better place for others with disability. So that our Zigi will have the same opportunities as your children will – a mainstream education, a job, long-lasting friendships, and the freedom to live an independent life.
For starters – let’s stop the use of words like “spastic” or “retard” or “special” when we share photos of ourselves or our kids pulling silly faces. Let’s stop “shushing” our kids when they ask questions, but instead encourage them to find out more, explaining that there is nothing “wrong with” people who look or behave differently, they are just different. Let’s stop generalising – “they” (people with Down syndrome) are not all the same, just as each person in your family is different despite sharing the same genes! Let’s stop comparing, to what our prejudice sees as “normal”. Let’s stop underestimating.
Let’s instead embrace difference and the things that make us unique. Let’s encourage each other to do our best, to aim high and to change the world in our own meaningful way. Let’s walk beside each other when things are tough and celebrate when things turn out. Surely the tapestry of all our lives will be richer for it.
“Today you are you! That is truer than true! There is no one alive who is you-er than you!” Dr. Seuss
So Zigi, today we celebrate all the awesome ways that you are you-er than you, and all the ways you make our lives richer just because you are here. We have so much to learn from you little man.
Happy World Down Syndrome Day 2018! Please feel free to share this post today (or any day!).