A WHOLE-OF-LIFE autism centre for Bendigo is a step closer after local Department of Education officials agreed to meet with those pushing for the facility.
The Bendigo Weekly last week reported on the campaign of Strathfieldsaye mother Rebecca Kelly.
Rebecca has two children with Autism Spectrum Disorder and believes Bendigo should become home to Australia's first whole-of-life autism facility.
Despite not hearing any positive news from the department or the State Government after regularly requesting meetings, Rebecca received a call after the Weekly's story ran.
"They weren't even returning my phone calls. I was calling them every week" she said.
"They are now saying let's get together, which is great. It was because of the article.
"I think this is a very significant step. Things are going to start moving in the right direction."
Rebecca said she had been inundated with support.
"I put my phone number in the story and it has not stopped ringing," she said.
"Every morning I wake up and my message box is full.
"This is telling everyone there is such a huge need for this."
Rebecca said she was looking forward to Thursday's meeting and hoped it was positive.
"I am not walking away without them saying they will look very, very seriously at this," she said.
EARLIER
REBECCA Kelly doesn’t teach her children the meaning of the words “no” and “can’t”.
It’s a good thing, because she doesn’t know the definition of them anyway.
Two of Rebecca’s children – Audrey, 4, and Patrick, 2, – have been diagnosed with Austism Spectrum Disorder.
According to Autsim Spectrum Australia, ASDs are lifelong developmental disabilities characterised by marked difficulties in social interaction, impaired communication, restricted and repetitive interests and behaviours and sensory sensitivities.
There aren’t too many people in Bendigo more qualified to talk about the effect of ASD on a child and a family than Rebecca.
Every moment of every day is hard. From getting dressed to making a phone call, to going on an outing. Nothing is simple.
“I had to almost grieve the loss of a child,” she said, of the diagnoses.
“All hopes and dreams you have for your child for the future are gone.
“A lot of other parents in Bendigo, once they get a diagnosis, give up their jobs, they end one life and start up another.”
However, you will never hear Rebecca complain, unless you ask about the services and information available for those with ASD.
If you do, prepare to be blown away by a passion and a desire to make things better, to get things done.
And don’t let her hear you say “no”.
Rebecca’s positivity and determination is remarkable given the state of services for those with ASD in Australia, and locally.
There is a two-year waiting list for early intervention services in Bendigo.
Her two-year-old son, Patrick, has been diagnosed, but is still on an early intervention waiting list.
Rebecca’s daughter, Audrey, works with “the fantastic people” of Noah’s Ark, but she knows as soon as she turns six, that funding will cease.
“Once your child turns six that is it,” Rebecca said.
“They stop seeing them and it is off into the big, bad world. Funding is cut and most don’t qualify for an aid. Why?”
Australia is one of the few developed countries in the world to not have a whole-of-life ASD facility.
Bendigo’s overloaded early intervention services, and the need to continue therapy into adulthood, has spurred Rebecca and a number of parents of children with ASD, to push for a whole-of-life centre to be built in Bendigo.
Experts put the number of people diagnosed with ASD at one in between 80 and 110.
Rebecca said by 2020 that figure was expected to be one in five.
She has spoken to the State Government about building a centre, but, despite those numbers, is getting little response.
“There are parents out here who are out of their minds,” she said.
“I think about the future when all these kids have been diagnosed.
“Where do we want to be in 20 years’ time? We want to tap these young minds now and bring out the best in them.”
Rebecca believes the rates of ASD in Bendigo are higher again.
“Bendigo is a blackspot. There are a lot of young parents moving to the area from Melbourne now having children diagnosed,” she said.
“The city is a hotbed of people who are on the spectrum.”
The ASD facility will not just act as an information and support service for parents.
“We need to look at accessing the minds of these kids when they are
young and access the minds of them as adults and work with therapists to
teach them,”
Rebecca said.
“I am also looking at this centre as a place where people can refer people to from across the state and across Australia.”
All she needs is $2.5 million, over four years.
“They even have one of these facilities in Jerusalem,” she said.
“That city struggles with the basics of life most days, but they have a whole-of-life centre.”
Therapists around the world have had success teaching people with ASD by using their specific interests, or obsessions.
“My daughter is obsessed with dinosaurs and my son, trucks,” Rebecca said.
“My son has limited speech but he can tell you what truck is what.
“The key is using that information to teach children, which is a huge thing.”
It is the whole-of-life service that brings the kind of freedom that Rebecca, and others, are fighting for.
“I do get angry about one thing, and that is I see the need for a whole-of-life centre every day.
ASD on the air
REBECCA Kelly’s passion for better
services and information for people with Autism Spectrum Disorder and
their families will take a big step next month.
Rebecca will host Australia’s first ever ASD dedicated radio show, Real People Talk ASD, on Bendigo’s Phoenix FM.
The show will be launched at the Star Cinema on September 1, and is expected to gain a lot of attention.
Local, national and international ASD organisations have already shown interest in taking part.
“Having this radio program is not just a huge thing for the city, but for the world,” Rebecca said.
“We will have lot of local people on the show to talk about the things they are doing now to make ends meet.
“It is a simple thing but it is helping people who don’t often have that platform to tell their story.
“It is also about raising awareness. It is great for Bendigo.”
The show will also inform locals about upcoming events and programs,
give positive feedback to parents, provide information from experts and
interviews with world-reknowned ASD specialists.
The launch, which begins at 11am, will include guest speakers,
giveaways, the announcement of the love broadcast date, and a free
screening of Dr Seuss’ The Lorax.
Rebecca is keen to hear from people wanting to be involved with the launch, as well as the broadcast.
For more information, call 0413 618 088.
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