October is a special month for families with children with Down Syndrome – or trisomy 21, which means a person has three copies of the 21st set of chromosones.
It’s a time to share with the broader communitY the special challenges, blessings and talents oF their kids, and raise awareness of the brilliant support of the down syndrome association of Queensland.
As Cally Ward, mum to four-year old Sarah Ward, explains: “We are holding a ‘Step up for down Syndrome’ walk for families and friends, which is an even that focuses on families having fun and sharing with the community.”
Along with the Step up for down Syndrome Walk, Sunday 13 october at the Broadwater Parklands, Southport, between 9.30am to 11.30am, families can enjoy a sausage sizzle, various activities and a photographic display which Cally describes as “a nice way to connect with the broader community”.
“The images are portraits of our children. it’s a non-confronting way to start the conversation. it allows people to reflect and then come and engage with us. And when people compliment our kids and their expressions, it gives us a real boost too!”
Vital to the support of parents with down Syndrome children are the resources of the dSAQ, as well as socialising and networking with other families.
“We have a Facebook page to share events, exchange ideas and communicate, and the dSAQ runs playgroups and weekly music therapy sessions with hamish King – one for pre-schoolers and another for older children. the kids love the interaction, the music and the fun! it’s great for their confidence. they have really bonded with each other. my little girl, Sarah is about to go to Prep in January and it’s helpful for me to meet other families and hear their experiences.”
Cally says that living on the Gold Coast is ideal for her family. “As well as the lifestyle, there’s a good level of support for a regional area. the mater hospital is up the road in Brisbane.
During october and every day, Cally seeks to impart the message to friends and the community that living with down Syndrome “is not the end of the world”.
“I did undertake prenatal testing. i was 39 years old. most of the people i know were younger. i didn’t want to go through the amniocentesis if there was a chance i would lose her. i was shocked when she was born. i took one look at her and noticed her eyes weren’t blue, and on my second look, i noticed. the paediatrician confirmed it. Sarah was born through emergency surgery and we nearly lost her. i would rather have her as she is than have lost her.”
Down Syndrome happens at conception, like a lot of different conditions. it occurs in one in 800 births.
“So if there are 3,000 babies born each year on the Gold Coast, there are likely three or four in the same age group. it’s the most common chromosomal abnormality. it’s just life.”
Walking with Sarah or at the shops, Cally says she has never had a bad reaction. “As a child, she has been warmly received. Perhaps a few second looks, but because she’s a happy, open, smiling child, you can’t help smiling back.”
As well as opportunities to participate in dancing groups, singing groups, eisteddfods and other groups, Sarah attends playgroup, with children younger and older. “i was able to observe the different milestones in other children of various ages, which encouraged me to see that all kids have a different rate of development.”
Sarah will be attending her local public school next year, something with Cally says will be helpful in her development and socialisation.
“We all have a vision for our children: that they leaves school, join the workforce, become part of the community and contribute to the community.”
The one thing Cally has observed over her four year journey is that “disability doesn’t discriminate”.
“Down Syndrome affects people from all walks of life and we have one thing in common – love for our children. through dSAQ i have made lovely friends, people i wouldn’t have otherwise met. the support we provide each other is phenomenal. And from learning from them, i have found myself mentoring the next generation.”
If you would like to learn more about the DSAQ, please visit www.dsaq.org.au or telephone (07) 3356 6655. You can donate online to support the excellent ongoing work that the DSAQ does in providing families on the gold coast with services and support, as they make their journey with down syndrome.