Mount Isa parents talk about hardships of living with autism spectrum disorder and chronic disease

MINGLING: Anglicare North Qld's Deb Mellor, mother Tara Eketone and daughter Onyx Buchanan, 2, and Anglicare's Jodi Martyr sit in the MyTime meeting. Photo: Chris Burns.

MINGLING: Anglicare North Qld's Deb Mellor, mother Tara Eketone and daughter Onyx Buchanan, 2, and Anglicare's Jodi Martyr sit in the MyTime meeting. Photo: Chris Burns.

MOTHERS of local children with chronic disease and autism disabilities hold fortnightly meetings at the Mount Isa Special School socialising with those who understand their experiences.

To the reporter they share their challenges of having children with these disabilities in a community such as Mount Isa on condition of anonymity.

“You’re happy for the inner circle to know and when it comes to the general outside public you’re reluctant (to talk) because people just judge you or judge your child,” a mother said. 

That’s one of the key challenges; judgement. It affects these parents’ and children’s social and day-to-day life. Even shopping at Coles or Woolworths is a struggle if the child becomes overwhelmed and makes noises or has a tantrum.

Living in a small town could be tougher socially and not just because of the lack of health services and expertise in the region, they said. 

“Sometimes it’s tougher because you have small town mentality or they gossip whether on the vent page or behind your back,” the mother said. “Other parents come across and say ‘it’s okay, can I help you?” It’s both sides. At least here it’s only five minutes across town.” 

Another issue is the transience of medical practitioners to the region. This was important for the treatment of the child, but also for his or her comfort.

“You can have a great doctor but your child needs to have that feeling of being comfortable with that doctor,” she said.

The mothers are asked the question “why not move from Mount Isa to a city with better support?” 

“You need to find a job, you need to find employment because having a child with a disability is expensive..you work here, you live here, it’s not just a matter of saying you can up and go somewhere else,” a mother said. 

The fortnightly MyTime meetings are for families and carers of children of chronic disease and autism disabilities aged up to 16 years, and are organised by Anglicare North Queensland.

They are held every second Friday from 9.30am to 11.30am. Contact Deb Mellor on 4743 8390 or visit the Anglicare office at 12 Miles Street for more information. 

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