Just recently Jessica Nagle celebrated her son Victor having his hair cut. Not such a big deal for most parents of a four year old, but for Victor to get through the experience without a massive emotional meltdown was a first – the latest in a growing series of ‘firsts’ now that he has the support he needs.
For any child the developmental difference between two and four years old is huge, but for Victor – who hails from Albury in southern NSW – it’s been nothing short of miraculous.
“Victor has become extremely social since he’s been able to communicate verbally,” Jessica says.
“He’s been going to a community day care centre for the past 18 months and is now about the most social kid there – he’s made good friends, the workers there cannot believe the turnaround.”
Things couldn’t have been more different when Victor joined the NDIS in 2018 at age two. He was almost completely nonverbal, in the bottom 3 per cent of weight for his age, hardly slept at night and had to be supervised every waking moment because he would put anything in his mouth and move to unsafe places very quickly.
Jessica says her son was diagnosed early with autism, global development delay and epilepsy in the form of ‘absence seizures’, which means a state of waking vacancy. He also has pica, a psychological disorder which causes a compulsive need to eat non-food items.
“He had these humungous tantrums where he’d harm himself and others, mainly me, with huge biting,” Jessica says. “I had to keep him separate from his older sister Annabelle because he’d bite her as well because he didn’t know any other way of communicating.”
The entire family struggled through those first few years and Jessica admits to feeling “broken”.
Then along came the NDIS and Victor’s first plan, prepared with help from Jane Sinclair at Early Childhood Partner Intereach.
“It took me a while to get the concept but once I put my nurse’s hat back on and looked at the situation clinically, I was able to identify the key goals for Victor and get the support I needed from my amazing occupational therapist and key worker Amy,” Jessica says.
“She helps me adjust to Victor’s regular relapses so that even if we have to take a few steps back for a while, I now have the confidence that we will get back on track and keep moving forward.
With the support Victor’s now receiving, Jessica says the change she sees in him is “incredible”.
“Last weekend he went to his first-ever birthday party for his best friend Rupert and this weekend coming his friends will be coming to our house for his birthday party,” she says. “The more social interaction he has, the better he will be.
“If it hadn’t been for the NDIS he would have made no progress, he would still be completely nonverbal, he would still be extremely aggressive, I would still be getting absolutely pummelled on a daily basis. I feel like the NDIS supports are making our family whole again.”