Pat Suraseang
Supporting and having raised four healthy children with no significant hurdles, when Jill Hatton welcomed baby boy Quinn, she had no idea of the road ahead for her family. Diagnosed at birth with Noonan Syndrome – a genetic condition which Jill calls “one of the world’s most common unknown disorders” – Quinn was already faced with likely developmental delays as well as short stature, related heart conditions, and other physical issues.
So, she kept a close watch for any problems. Jill soon noticed her youngest, now six, wasn’t hitting milestones she’d marked with her older kids.
“He wasn’t babbling when I would have expected him to be, starting to make certain sounds,” she tells The Weekly. “He walked very late compared to my other children. And socially, when we were in playgroup, he preferred to stay by himself. We noticed early on that there were differences between him and (his siblings). He didn’t gain weight, there were a lot of failures to thrive.”
Aged three, Quinn was diagnosed with Global Developmental Delay and autism. It was a relief in a sense. It meant help was now available to the family. They had immigrated from northwest England to Adelaide shortly after Quinn’s birth and had no family support system in Australia. As a result, Jill was put in touch with The Benevolent Society. It helped organise occupational and speech therapy for Quinn.
“It made such a huge difference to us as a family because it felt like all the differences we’d noticed, someone else understood,” she says. “We weren’t fighting anymore to get that help.”
Therapy was making inroads, she noted. But it was frustrating not to be able to play an active role in her son’s development. And then came a new pilot program that Quinn was eligible to take part in.
Occupational therapists (OTs) Eden Diggle and Jacqui xxx met while working in a Darwin clinic. Both researched how to help parents in supporting their children through play as a core part of therapy. They changed their practices as a result. This brought them to the attention of The Benevolent Society, which asked them to develop the pilot program, In Sync.
This is an early intervention program for kids up to seven years of age. The pilot leans into research that children will learn and respond best to their primary caregiver. As such, In Sync’s OTs and speech therapists are upskilling parents to adopt games-based methods at home. These methods would traditionally take place once a week at a clinician’s office.
“Historically, the way we’ve been trained is that the OT and speech therapist does most of the work in a session with a child directly,” Jacqui explains of the shift in their approach and the basis of this new program in which Quinn and Jill are taking part.
“We come up with activities that are going to be helpful for the child. We come up with the play idea and lead the session. And it can have some effect on child development, but it doesn’t have the best effect.
“What we came to understand was that a child’s brain is way more lit up when they’re in relationship with their primary caregivers. And when they have the play ideas themselves, they are even more lit up.
“So by focusing on the parent and the child interacting, the premise is that the child’s going to be way more engaged in the session, their brain is actually going to be doing a lot more firing and wiring and that’s where we get better outcomes for children.”
And that’s important, Eden shares, as more and more children are presenting with developmental vulnerabilities and identified developmental delays nationally.
According to AEDC (Australian Early Development Consensus) data in 2021, the biggest increase was in language and cognitive skills. The report states that the percentage of children who were developmentally vulnerable increased from 6.6 per cent in 2018 to 7.3 per cent in 2021.
Last year, 63,129 children under the age of seven accessed the National Disability Insurance Scheme (NDIS) under Developmental Delay alone.
“And this number is not inclusive of children who are presenting with developmental vulnerabilities but haven’t accessed or wouldn’t meet the criteria for support under the NDIS,” Eden says.
“There is research that shows that for every hour of therapy where the therapist is working directly with the child, there is only one hour of benefit. But for every hour of therapy where the therapist focuses on building the capacity for the parent of caregiver? That child receives around 87 hours of benefit. So we’re supporting the parent to be able to take what we are using in sessions and apply that to their daily lives – to all of their routines and environments.”
One hundred children are taking part in the In Sync pilot program, which has sessions running for between 3-6 months. And 80 per cent of the families taking part have reported improvement in goals for their kids to date.
“We started In Sync in July. I thought it was a great way for me, as a working parent, to get on board and personally be part of the journey with Quinn rather than feeling on the outside of it,” Jill says.
“It’s been a great learning curve for the whole family. We get tip sheets every session and I know that if we’ve had a particularly bad day – where there are big behaviours that I as a parent don’t know how to deal with – I can always go to The Benevolent Society. They’re on the other end of the phone or I can send a quick email, and they’ll give me tips of what to try.”
Quinn’s speech therapist, Carly, records the sessions. This is so that Jill can watch back and understand where things went well in their play. And also where she could have tried something different.
“I was aware that play was important with Quinn,” she says. “Now it’s understanding that however busy our lives get as a family, even just five minutes you might find within your day can make a huge difference. And it’s okay for it to just be that. As a parent, you’re always questioning what you could do differently, or you go to bed at night thinking, ‘I didn’t get a chance to do that today.’”
And in this period, she’s thrilled to report, she’s noticed Quinn coming on in leaps and bounds.
“We still have our moments but it’s helping him engage with his peers in a more respectful, proactive manner,” Jill says with a smile at her son. “He feels more understood I think, and a lot more secure to engage with other people.”
Learn more about In Sync and other services run by The Benevolent Society on benevolent.org.au
You can see more of Quinn’s story on Christmas with The Australian Women’s Weekly streaming on 10Play.
This article originally appeared in the Christmas 2024 issue of The Australian Women’s Weekly. Pick up the latest issue at your local newsagents or subscribe so you never miss an issue!
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