A Family in Need of Support
It can sometimes be the simple pleasures in life that strengthen the family bond. Little things like a picnic in the park, a relaxed Friday-night meal at a restaurant, or a visit to the museum are things that some of us can take for granted. But for so long, these activities were pipe dreams for the Wilke family. Even getting through everyday routines, such as bath time and dinner, were exhausting - and often impossible - for this family of six.
Kym and Brock Wilke’s seven-year-old daughter, Zoe, lives with Autism Spectrum Disorder (ASD) Level 3. Profoundly deaf in both ears and non-verbal, she also has a chromosomal deletion disorder, an intellectual disability, and developmental delays. As a result, Zoe requires substantial support.
“Developmentally, Zoe is similar to a two or three-year-old,” says Kym, who also has three other children: nine-year-old Emma, four-year-old Sam, and two-year-old Isabelle. “She’s also a runner - and I mean that in the true sense of the word. When we go out, she will spend the whole time running and walking. That’s her way of calming down. She’s very fast, and she doesn’t have an awareness of danger. So, she needs someone to look after her at all times.”
In early 2019, when Zoe was four, Kym was under an incredible amount of strain. Juggling Zoe’s high needs and a newborn, she had limited time for her other two children, let alone any time for herself.
“Zoe can have severe and aggressive meltdowns, especially in the afternoons,” Kym says. “She can get very physical. Because I was the only parent at home, I would count on Emma to babysit her siblings while I took Zoe to another room to help calm her down - sometimes for 45 minutes.”
With Brock working late hours dinner often went by the wayside, and Kym’s energy was spread thin.
“Our family was quite isolated. We never went out for a meal. I never took the kids shopping. We didn’t go to the beach or the pool - it was too difficult. On the rare occasions we did go out, one parent had to be fully devoted to Zoe, so we were a disconnected family unit. A lot of responsibility was placed on my older daughter, Emma. She is very sporty, but she didn’t get to do any extracurricular activities because I couldn’t handle taking Zoe and the other kids, too.”
Kym knew something had to change but didn’t know where to begin. She was put in touch with The Benevolent Society and that’s when a new and brighter future revealed itself to the Wilkes.
Working Towards Change
Child Development Specialist Dion Tobi could see the Wilkes were experiencing ongoing challenges day to day. As part of The Benevolent Society’s Early Childhood team, Dion helps families with children aged 0-6 access NDIS (National Insurance Disability Scheme) support through the Early Childhood Approach (ECA) service.
Through Dion’s discussions with the family, he could see they would benefit from additional support through the ECA to build Zoe’s capacity and, in turn, support the family unit.
“A lot of strain was being put on the family’s relationships - particularly on Zoe’s older sister, Emma,” says Dion. “Emma had become a pseudo-parent to Zoe, supporting her in the afternoon and helping to manage her routine and behaviours. We wanted to give Emma her childhood back, while also making sure Zoe was given adequate support.”
Through ongoing support, Dion got to know the family and recognise their needs over time. He was able to understand the need for a Support Worker and then articulate to the Agency why it was important for Zoe’s ongoing development. For Kym, this was an enormous relief.
“Dion did an amazing job of helping us navigate the NDIS,” she says. “He was so patient and understanding. He never made me or my family's needs feel like an inconvenience. My daughter was very lucky to have someone like Dion in her corner fighting for her.”
Dion understands it’s easy for families to feel overwhelmed by the NDIS, which continues to evolve. But he wants people to know that support is available.
“We understand families can be a little overwhelmed when they first connect with the NDIS; but at The Benevolent Society, our role is to walk them through the process and help them to become confident in navigating the scheme,” Dion says.
“The Wilke family is a case in point. Having a Support Worker has made a significant difference for the family. They have opportunities now. They’re able to go out more often. They’re no longer stuck at home with no support. And the biggest thing, for me, is the freedom it’s given back to Emma. Zoe is the key focus, of course, but the flow-on effect for the family as a whole has been so significant.”
A Brighter Future
Since Support Worker Sarah came on the scene in 2020, the Wilkes have been busy making memories. Emma now plays tennis and does gymnastics, while Kym has the time to cook dinner and spend more time with her other children. The family has even had their first weekend away - a trip to
Mt Tamborine in the Gold Coast Hinterland, where Zoe was in her element, running along the rainforest trails.
“Sarah has made such a difference to our lives,” Kym says. “Because Zoe has Sarah to walk with a couple of afternoons a week, she’s more relaxed at home. Recently, we spent the day at South Bank and had lunch at a burger place. Zoe spent a lot of time walking and pacing, as she always does, but Sarah walked with her. The kids got to ride a train for the first time to get there, too. Without Sarah, we would never have been able to do that. Little things like that are very nice.”
Now Zoe is seven and has transitioned out of the ECA service, she receives NDIS funding through a different service provider. But Kym will never forget the support she received from The Benevolent Society, and especially Dion, who made everyone in the family feel they mattered.
“Dion was so wonderful and helpful,” Kym says. “Without him, we wouldn’t have the support plan we have now. Before we got a Support Worker, I felt like I was spread very thin. There wasn't enough of me to go around, and Zoe was taking up the majority of my time and energy. This made me feel very guilty - guilty about all the normal family moments my other kids were missing out on. Having a Support Worker has helped relieve these feelings considerably.”
With one-on-one support, Zoe is making real developmental progress. The family’s relationships have strengthened, and Kym’s confidence has blossomed. She knows what her family needs, and she’s unafraid to fight for it.
“Dion and The Benevolent Society’s ECA service have really equipped me for the future. I have learnt a lot about how to be an advocate. I feel I can do it myself now, and Dion has taught me all that. He wasn’t just going through the motions of his job; he shows a real passion for helping people. We are a very lucky family indeed.”
To find out more about how The Benevolent Society can help you, please call our Support Centre at 1800 236 762 or view our Services & Programs page.