October is officially Down syndrome awareness month.
Cally Ward is a proud Mum of Sarah, who is 14 and lives with Down syndrome.
Cally says she wears three hats, as an everyday Mum to a teenager, an advocate for Sarah as a person with disability and as an advocate for the community, through her role as a director of Down syndrome Queensland (DSQ).
Cally is one of six voluntary DSQ board members, tasked with guiding the strategy and goals of DSQ.
A PARENT’S ACCEPTANCE
“Acceptance to me means appreciating and valuing what Sarah contributes to the community and not trying to repackage her into a neurotypical box. This has as much been a journey for me, as it has for our community.
Prior to being Sarah’s Mum, the core values that were drummed into me by my parents were being complaint, responsible and punctual. All those values are irrelevant to me now, but they still underpin my basic psyche, so I struggle with this every day.
Punctuality is the classic example. Sarah is a teenager who wants choice and control in her life. She demonstrates this by being ready for an event on her terms, when she’s ready. We get there when we get there. I can’t make Sarah punctual, so in the words of Elsa, I am trying to Let It Go, accept Sarah for what she is and adapt my expectations and lifestyle to fit her.”
“Moving on from my own personal acceptance of Sarah, the next step for me is creating a community around Sarah which values her and her contribution. In our everyday lives, two groups of people have welcomed Sarah and support her to live her best life.
Firstly, our local bowls club, with its diverse group of patrons, young and old, sober and drunk!, have embraced Sarah with open arms. Every couple of weeks we attend the music trivia night. The regulars love Sarah and her passion for music and performance. They cheer when she sings; they get up and dance with her. Their support has allowed us as parents to relax and let Sarah be herself, exploring her boundaries in a safe environment where everyone knows and accepts her.
Secondly, our local NRL team, the Gold Coast Titans, have created a wonderfully inclusive community where diversity is supported and celebrated. This starts with the team itself and the work they do every day in the community, but the real benefit is when their leadership spills over into the general public.
Stadiums and events can be loud and overwhelming, but Sarah is perfectly at home because, I believe, she senses she is amongst friends. The crowd at the game are united by their shared love of footy and they are generous, supportive and positive in their interactions with Sarah.
The world we live in can have very occasional dark moments and I am not naïve enough to think there will not be risks as Sarah grows up and experiences increasing independence. But 99.9% of Sarah’s life and interactions with the general public convince me that there is hope for the future and that society will support Sarah, when I am no longer around.”
WHERE TO NEXT?
Personally, for Sarah, Cally is looking to one of the biggest single transitions, moving into Year 10 and onwards to adulthood and a post-school life.
We can’t wait to hear about her next exciting chapter!