Bringing up a child with a disability in 2023 comes with challenges, but the advances in medical technology, treatment plans, advocacy and inclusion gives additional support for parents.
The reality for parents raising a child with a disability in the early 1990s and 2000s differed immensely, including the important fact that the NDIS did not exist.
Debbie Petropoulous is a bright and highly motivated mother to Callee, a 29-year-old woman who was diagnosed with Aicardi Syndrome shortly after turning one.
Aicardi Syndrome is an extremely rare genetic neurological disorder with approximately 4000 cases worldwide. [i]
Callee’s disability means the connection between the left and right side of her brain does not exist, resulting in her being non-verbal, having poor balance, vision impairment and epilepsy.
However, with modern technology, Callee can communicate via a communication device.
With two older children, Debbie and her husband, knew Callee was developing “very slowly” but it was not until she caught a nasty flu that the puzzle pieces started to fall into place.
After going to the hospital, Callee was diagnosed when a doctor happened to be walking by her cot and noticed her turned eye.
“A doctor walked past and said, ‘Oh she has a pretty nasty turn [in her eye]. Have you ever had that turn checked?’
“We had blinders on, but we could not. As parents, we just saw this beautiful young baby girl.”
At the doctor’s recommendation, they were able to get Callee tested and the initial prognosis was confronting, leaving Debbie feeling helpless.
“The ophthalmologist came along and he was checking Callee’s eye and then the next thing we know she’s having an MRI and we were being told that she has Aicardi, she’ll have a short life span expectancy, likely to be like a rag doll in a bean bag most of her life, due to excessive seizures.”
Despite the life-expectancy for someone with Callee’s syndrome being around 13 (at the time of diagnosis), and the doctor’s grave diagnosis, Callee has exceeded expectations.
“She’s 29 and she’s fighting strong.”
When questioned about the helpfulness of the doctors at the time, Debbie recalls the lack of available information.
“The Doctor scribbled it down on a piece of paper ‘cause we had never heard of it.”
Leaving the researching up Debbie and her husband, and before Google, Debbie recalls having to turn on her dial-up computer, hearing the dings and hoping to find answers.
In those early years, Debbie feels as though there was no sufficient communication, support or advice that the family received.
“I sort of found out about Aicardi Syndrome [online],” completely absorbed in her research she phoned a family living in the United States at 3:00am their time.
“I said, ‘Hey, can you tell me what is going on here with my daughter? She’s just been diagnosed with the Aicardi Syndrome’.”
Debbie believes that had Callee be born in today’s world, things would be better.
“Back then there were no social media networks like there is today. I think I’ve always said If I knew what I know now back then I think things would sort of slightly be different.”
Initially, the community was small and included early intervention groups to help families feel less isolated but other than that, there was not much else according to Debbie.
Services like Spinal Cord Injuries Australia’s NeuroMoves have immensely added to both Debbie and Callee’s life, finally being able to feel as though they are a part of a family.
“It’s probably one of the best services that we’ve been connected to. They are so dedicated, and they are passionate. Their advice has helped considerably.”
Another major change in care Debbie has noticed over the years is the discourse surrounding the importance of parents being okay.
“Mental health problems are more at the forefront these days, so I think, you know, they’re [medical professionals] always checking. Are you OK?”
According to the Australian Institute of Family Studies, parents of children with disabilities are more likely to experience poorer mental health.[i]
Debbie and her husband wanted their two other children to be a part of it from the start.
While Debbie is proud of Callee it does not take over the pride and love she has for her two other children.
“I am always aware, and I always was aware of not putting them on the back burner or putting them aside, they need to be nurtured. And to have as much as a normal life as possible.”
Callee’s has a particularly strong relationship with her eldest brother, “He has the most amazing bond with Callee. It’s just so special.”
Their relationship has helped Debbie and her husband with Callee’s future and knowing she will be looked after and that he will always be there for her.
“She will always have a roof over her head. My older son would be her carer… He’s already told me that, and that he would take care of her.”
A 2017 study from Carers NSW showed that 54% of adult siblings had discussions sounding their involvement of the future of their sibling who had a disability.[ii]
Debbie and her husband have insisted on doing anything and everything that would make Callee happy, giving her a fulfilled life.
The family recently went on their first cruise from Melbourne to Hawaii, “That was just the best experience for Callee.”
It’s an experience Callee still talks about daily since they have returned.
For Debbie, the concept of future has fluctuated throughout Callee’s life and the different stages she has gone through.
Those first years were hands on, but once school started, Debbie found herself suddenly with six free hours a day.
To combat the sudden loneliness parents feel, particularly when your child has a disability, Debbie became an integration aide, essentially helping kids with different disabilities integrate more seamlessly in the classroom.
She did that for 12 years, throughout Callee’s entire schooling life, and often wishes she could go return to that field, because of the advance in technology and her skillset.
The integration aide work helped Debbie form a closer connection to Callee on a deeper level and helped her have “a better understanding” of disability overall.
When it comes to Callee, her milestones are a huge accomplishment for Debbie, because no one, including those initial doctors, expected it to happen.
“She walked at four years old. The doctor said she probably wouldn’t walk at all. It was like the best, there’s no words to describe that feeling, seeing her take her first steps.”
Recently, significant milestones have been verbal, with Callee being able to say a few words including ‘mum’ and ‘boom’.
Ultimately, Debbie just wants Callee to have as many life experiences as she can and to be able to enjoy the same things as those her age.
“We want her to do what other 29-year-old young women would do, it is very important to me.”
Being parents to a child with disability is challenging and turbulent, and Debbie wants other parents to know that being an advocate for your child is the most important thing.
“Never give up. Always strive. Keep going and get involved.”
Written by Sathsara Radaliyagoda.
References:
[i] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9228285/
