In a first for Tasmania, non-verbal children who use communication devices have taken part in a camp to help develop self-expression and ease communications with their loved ones.
Mohammad Aldergham, CEO of Variety Tasmania, which organised the camp — called Motor Mouth — said it was designed to help families better engage with children who use augmentative and alternative communication (AAC) devices.
Families at the camp had the chance to fully embrace the devices and learn to properly communicate with young people through "modelling" — pointing to or activating symbols, images and icons on the screen as they talk.
Real-life scenarios at the camp, including a food truck and workshops, put their skills to the test.
Family weekend focused on connection
When Hobart's Ken Tran heard about Motor Mouth camp, he signed up straight away. His 10-year-old son Leo uses an AAC device but has recently faced difficulties and frustration about "a lot of things he used to enjoy".
"He is a bit frustrated at the moment because he can't communicate with us in a way that he wants to," Mr Tran said.
"It's getting harder. Sometimes he throws a tantrum and we're getting to the point where we don't understand him as much as we'd like to understand him."
Mr Tran said the camp presented an amazing opportunity to meet other families facing similar challenges.
"It's an eye-opening experience that we had at the camp," he said.
"There were a couple of mentors who are non-verbal. One is going to college to study graphic design next year and another person can write books. Their lives are amazing.
"We saw that Leo can achieve similar things."
The camp showed Mr Tran's family what they were capable of and could facilitate for Leo.
"I used to think that as long as I can understand Leo and get him what he wants, that's enough, but after the camp I'm 100 per cent sure it's not enough. He definitely needs more," Mr Tran said.
"The best way for me to help him, is to get him the pathways to express himself more."
Piloting to success
Mr Aldergham said it took mere minutes to convince long-time collaborator Simon Ellaby, principal of Southern Support School for children with disabilities, to back the camp.
Held in Western Australia over a decade earlier, this was the first camp in Tasmania.
"I reached out to Simon and I said, 'I have an idea for you'. We sat down and about 15 minutes later he said, "I'm in, what do you need from me"," Mr Aldergham said.
Twenty-five volunteers, including speech therapists, speech pathologists and mentors who use AAC devices for communication took part over three days.
"The whole idea of the camp is to get families of children who have limited communication ability to familiarise themselves with the AAC devices," Mr Aldergham said.
"We had an occupational therapist, disability services and education, teachers, teaching assistants, a volunteer who flew all the way from Queensland and another who came from Geelong."
On the second day, Mr Aldergham saw a shift in communication among participants.
"Families started to let their guard down and get into the spirit of what they were there for," he said.
"They were no longer on watch — "Am I being stared at, looked at, is my son or daughter being judged?"
"I almost remember the minute that penny dropped for me and I thought, 'We are on to something here'."
For Mr Tran, that moment came after dinner on the first night.
"Some of the kids know each other and they communicate even though they don't say anything," Mr Tran said.
"Most of the kids are non-verbal, but the way that they communicate is so genuine and we can learn that part from them."
Another Motor Mouth camp?
Motor Mouth will be held again in Tasmania next year and Mr Tran intends to participate again.
He said his biggest lesson from the camp was continued modelling on the AAC device to increase the range of symbols, letters, words and phrases available.
"As long as we keep modelling the device, so that Leo can use it to communicate what he wants, that's the most important thing family and friends can do," he said.
"Hopefully by the time the next camp comes, we will have more stories of our modelling and can be an example for other families."