Sharon’s journey with her now adult son Lee and teenage daughter Keeley, both diagnosed with autism, has been about learning and adapting to the way her children see and interact with the world.
Lee was diagnosed at the age of 10, while Keeley was diagnosed at the age of five, both initially with Aspergers, later revised to autism spectrum disorder (ASD).
The process of diagnosing her son with autism was long and Sharon says that when the diagnosis finally came it provided her with a sense of relief because she now knew why he was struggling and how she could start to help him.
Sharon first suspected there “was something wrong” when Lee was two years old. She often felt she had trouble communicating with him and that he wasn’t understanding her.
“I went to doctors and they said he had trouble with his hearing. He was getting lots of ear infections, and these were impacting on his learning, so they gave him grommets.”
At the age of five, Lee was diagnosed with attention-deficit/hyperactivity disorder (ADHD) and then at age 10, he was declared high functioning and low in social and motor skills.
“From there Lee had to go and have a hearing test in the Royal Melbourne Hospital, and we then found out that from birth to the age of five he had never heard a word that I said.
“His brain cannot block out outside noises. So if the noise levels are normal and there is no talking, then he hears 100 percent, but if the noise levels go up and there is a lot of noise around, then Lee only hears a third of the world.
“They also told me that my son was a competent lip reader… and it wasn’t until it was brought to my attention that I went ‘Oh my God’ he does too’ and I know he still does that today. He compensates for what he can’t hear by reading lips.”
Lee, who was told he would struggle in society and that he wouldn’t have a family of his own. Now Lee has two girls, aged four and one. He is a qualified security and bodyguard, and his goal is to become a freight train driver.
In Keeley, who was a late walker and crawler, Sharon noticed similarities with Lee and, at the age of five, Keeley was also diagnosed with Aspergers.
Keeley had also previously been diagnosed with Barlow Syndrome, a common heart valve abnormality, and Spondylolisthesis, a spinal disorder where a vertebra slips forward onto the bone below it.
Finding support a challenge
For Sharon, finding support for her children wasn’t easy to begin with, because there wasn’t a lot of information or support available.
“My son was diagnosed back in 2002. Back then, there were no autism services available, and it wasn’t very well known," Sharon says.
But when services were available, they were able to offer Sharon and her family the support that they needed.
“We went through Carers Victoria and got hold of an organisation called Vista, and they were really good. They were able to help us and give us some support, time out and things like that. Keeley was also seeing a speech therapist.”
Although Keeley has now outgrown many of the services she once used, Sharon says that they have learnt enough to be able to continue the work throughout Keeley’s life.
As Keeley progressed through her school years, she soon found that she struggled not only with Maths, English, but also with retaining information.
“Keeley can read a whole book, 450 pages, she’ll read the whole book but if you ask her what that book is about she cannot tell you what it is about, she can only tell you that she read it," Sharon explains.
As Keeley was ready to head to High School, the decision was made, due to bullying and travel distance, to home school. In the process of this, she needed a cognitive report.
“We obtained the cognitive report which came back and said that Keeley had an intellectual disability on top of her autism.
“She has an IQ of 62, and she functions at a grade 3-4 level. Automatically that made us realise that she was being set up to fail with education and that individual learning plans weren’t really available, and these kids were more or less being pushed through the system.”
A sense of injustice
It was this lack of support in school and her inability to obtain an iPad to help her at school that inspired Keeley to make sure no one else went through the same struggles she did.
Sharon says that Keeley’s injustice was what caused her daughter to say at age 13, “Mum we have a right to an education as much as anyone else. We have dreams too. So if iPads are what we need to learn then iPads are what we are going to get.”
Keeley’s Cause was born not long after. The charity provides iPads for children diagnosed with autism and intellectual disabilities. Starting with a small goal of two sausage sizzles to raise money for iPads for two children with a similar diagnosis as her, Keeley's Cause exceeded expectation as well as her original goal and in February of 2018 she was able to present the first six iPads in Ballarat.
Keeley has since raised $70,000 for Keeley’s Cause through doing sausage sizzles, volunteering events and donations and at the start of 2019 Keeley’s Cause became a national charity.
Sharon adds: “In the last 12 months, Keeley has received four awards. She’s been nominated for a few, became a semi-finalist [for others]. She became a finalist for the Human Rights Commission Medal last year. She won the Ballarat Youth Major Award for Keeley’s Cause and volunteering... She has [also] just recently won the Aspect Australia David Foster Award for 2020.
As Keeley continues to receive greater recognition for her work with Keeley’s Cause, Sharon says that her daughter is one of the people that inspire her and that she couldn’t be prouder.
“I am so inspired, and I absolutely admire her for what she decided to do so that nobody has to go through what she went through and feel the pain she did.”
Reflecting on the journey
When looking back on when they were first diagnosed to where they are now, Sharon couldn’t be prouder of her children and what they are doing.
“I look back now on all their struggles to become who they are today, and I am so grateful for the insights those struggles have given me. It meant I could better understand them to help guide them to achieve the best they could at any given task.
“They were always told to just try. They didn't have to be Einstein's but they had to give things a go to help them understand more of what they could and couldn't do.
“It's been quite a journey with ups and downs, meltdowns, tears, being bullied and singled out but they’ve grown up to be resilient kids, as best they can be, in what is an unpredictable world for them.
“I am so very proud of them both.”
Sharon says that one of the most valuable things raising her kids has taught her is how to be a better parent and person.
“You need to not be in front of them, or behind them, but beside them throughout the journey.
“When you take [the journey] together, the struggles are there, but the highlights are so much more. The things that they do and that they then create because they feel safe enough to be who they are, that’s when you see what they are capable of doing, who they really are, and what they are really about.
“It was a hard slog to get through because people didn’t understand what was going on [at first] because they didn’t know much about autism then. So we went along and winged it.
“My approach was my child has a disability, that’s okay. We may not be able to do some things the same as other people can do, but we are going to learn to do them to the best of our ability.”
What has your journey been with autism? Tell us in the comment section below.