The Swords family share their story and experience on World Down Syndrome Day this Thursday, March 21.
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Pearl and Adam Swords have found a home in Mudgee with their two sons, eight-year old Charlie and ten-year-old Rian.
Charlie is a socially intelligent young boy who has Down Syndrome.
Also known as Trisomy 21, Down Syndrome is a condition diagnosed when an individual has an extra chromosome 21 in their cells.
It is the most common genetic condition with six million people worldwide and somewhere between 13 and 15,000 in Australia.
Together with Down Syndrome NSW, the Swords family raise awareness for Down Syndrome through their love for Charlie.
Charlie
Charlie is beloved by the Mudgee community and is known for putting a smile on the face of everyone he meets.
"He is someone that people like to be around and his energy has a flow on effect," his mother Pearl said.
"It's a kind of gift, which is not to say that he's perfect by any means, like any other child he has his ups and downs."
Since moving to Mudgee when Charlie was ten-months old, he has grown to be very socially intelligent and aware.
"He has won some student awards for courage, and people will remark on his lovely manners," Pearl said.
With a passion for books and love of reading, the Swords family have worked to ensure that Charlie has a good education.
CEO for Down Syndrome NSW, Emily Caska, has been an important presence in Charlie's schooling and has pushed for inclusive education.
"Inclusive education means that no child gets left behind, and we're working hard to make that vision a reality," Ms Caska said.
"We are committed to changing the narrative surrounding children with Down syndrome and standing behind their choices for inclusion."
Pearl said that Charlie is just like any other kid, he just may need a few more therapy appointments and support.
"Charlie is pretty good in terms of his ability to give things a go and try them out," said Pearl.
Finding a support network
Pearl and Adam moved from Sydney to be surrounded by family and have a support network both for Charlie and themselves.
"There is a lot of love within the Mudgee community and that's something we will always be grateful for."
However, Pearl was encouraged to not consider a regional or rural location because of the potential lack of services such as OT physio and speech therapy.
"The conversations and fears really encouraged us to get in front of things and really support early Intervention which is strongly encouraged for any parent of a child with a disability" said Pearl.
"Regional families don't get as many services and support but the parents really rally together and advocate on the ground," said Ms Caska.
Ms Caska has found that the Down Syndrome communities in regional areas are tight and bond together more than metro families.
Pearl loves seeing Charlie being involved in school and fundraisers such as Jeans for Geans Day.
"When Charlie is included in community events, it is absolutely heartwarming."
"We all do our best for Charlie."
The Future
Pearl is aware things may become harder in the future but she is positive that their family adapt.
"We expect that things are going to get more challenging, but we just have to go with the flow and see how things eventuate," she said.
The life expectancy for someone with Down Syndrome has changed dramatically, in 1983 it was only 25 but now it is 60 plus years of age.
"The evidence shows being taken home and cared for in the community and with their family is better for life expectancy," said Ms Caska.
Pearl has a strong vision for Charlie's future.
"We would love, if he chooses, for Charlie to grow up in Mudgee, be surrounded by friends and family, and ideally do a job that he loves."
Individuals with Down Syndrome can be brilliant workers and beneficial to the workplace not only because of their energy but their many other qualities, Pearl said.
"They can be very detailed orientated, once given a job to do, they can be incredibly focused and would love to get a sense of validation or satisfaction that comes from a job."
The presence of Down Syndrome in the media has increased and we are able to see more people doing amazing things.
"There are actors, Olympians, and people who have been in their jobs for 30-40 years," said Ms Caska.
"I would love for people's eyes to be widened as well, that they can indeed provide within the workforce," Pearl said.