Bode and Violetta
Content Warning: These stories are about violence, abuse, neglect and exploitation and may include references to suicide or self-harming behaviours. They may contain graphic descriptions and strong language and may be distressing. Some narratives may be about First Nations people who have passed away. If you need support, please see Contact & support.
Violetta has several children. One of her teenage sons, Bode, is autistic and has cerebral palsy, psychosocial disability and other health issues.
Violetta told the Royal Commission that educators in regional schools lack disability training and awareness.
When Bode attended an early learning centre, staff told the family that parents ‘were getting very upset’ because he was ‘biting’ other children.
The family engaged occupational therapists and other early intervention services, but staff insisted the family ‘remove’ Bode because he was ‘difficult to manage’.
Violetta felt she had no option but to keep Bode at home until the family came to a resolution with the centre. She sought a commitment from the centre to train the staff in working with children with autism. After three months of negotiations, Bode went back to the centre.
‘It was their training that was lacking, not so much [Bode’s] disability,’ Violetta said.
By the time he finished at the early learning centre, Bode had transitioned from using a wheelchair to a walking frame. He started primary at a ‘fabulous’ special school.
Then the family moved to a regional area ‘and everything changed’. Violetta enrolled Bode into the local special school. The principal told her the school had no ‘children with behaviours’ in attendance.
One day, Bode came home in tears. Violetta was ‘absolutely shocked’ to learn the principal had ‘stormed into the classroom’ and forced Bode and two other children to stand in front of the class until one of them confessed to shoving toilet rolls into the toilet.
‘I don't want to go back to that school anymore. I'm going to kill myself,’ Bode told his mother.
Violetta believes the principal’s actions reflect a lack of disability training and awareness. ‘You can't attack the children, especially if you want a proper response. You don't attack them, they're not going to answer you.’
The family recently learnt that Bode had been misdiagnosed and actually has Prader-Willi Syndrome, a genetic disorder that affects a child’s growth and development.
The family is concerned about the medical consequences for Bode. Had doctors diagnosed him accurately, Bode would have been eligible for ‘early intervention’ measures, such as hormone injections to improve his muscle mass. They are also concerned about the impact it will have on his NDIS supports.
‘I’ve been in shock for a couple of weeks, and I don't know where to go with this ... it’s blown me away,’ said Violetta.
Disclaimer: This is the story of a person who shared their personal experience with the Royal Commission into Violence, Abuse, Neglect and Exploitation of People with Disability through a submission or private session. The names in this story are pseudonyms. The person who shared this experience was not a witness and their account is not evidence. They did not take an oath or affirmation before providing the story. Nothing in this story constitutes a finding of the Royal Commission. Any views expressed are those of the person who shared their experience, not of the Royal Commission.