Kellan and Estella
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.
‘You talk to any parent with a child with a disability, and their biggest thing is that they feel like they’re fighting, they are climbing up a wall all the time.’
Estella, mid-40s, has psychosocial disabilities. She is Kellan’s mother.
Kellan was born eight weeks prematurely and developed ‘pretty well’, but Estella knew from the beginning there were ‘going to be issues’. At two, he developed a ‘major’ stutter and stopped speaking. His speech improved with therapy but he continued to experience a great deal of anxiety.
In kindergarten, Estella told the Royal Commission, Kellan’s anxiety increased. The following year he had a number of different teachers and ‘his separation anxiety just got ridiculous’. Estella knew, ‘something was wrong’.
Having Kellan assessed for autism would require assessments by speech pathologists, occupational therapists and a psychiatrist. Estella couldn’t afford all of these. The teachers and principal at Kellan’s school told her ‘he’s fine, he’s just emotional’. The school couldn’t provide additional support until Kellan was assessed and Estella felt she had no choice but to remove him.
Estella homeschooled Kellan for the next few years. ‘He did amazing, he thrived.’ During this time she supplemented his meals with hospital formula to keep him healthy and he reached a good weight.
Estella ‘dipped into’ her superannuation to pay for Kellan’s autism assessment. He was diagnosed with autism, anxiety, dyspraxia and hypermobility – she wishes he’d been assessed earlier.
At seven, Kellan returned to school with some educational support. The school offered a healthy eating plan and refused to allow Kellan to eat the food he required.
On his first school excursion Kellan had a meltdown on the school bus. Three staff members, including the school principal, held him down and strapped him into the seat.
‘I said to the principal … “I’ll take him on the train, there is no point stressing him out.” And her reply was “He will get on that bus and if he screams all the way home, so be it.”’
The principal told Estella ‘it was about power’. ‘They don’t understand it’s his brain,’ Estella said.
Kellan can no longer attend school because it gives him too much trauma. He has bitten all the skin off his fingers. ‘No-one sees the after effects of what we’re dealing with.’
Estella reached ‘rock bottom’ with her mental health. ‘The impacts his disabilities have had on my disabilities [are significant],’ she said.
She applied for the NDIS on Kellan’s behalf. The NDIS funded a support worker one hour a week – giving Estella a little respite – but told her caring duties are her ‘parental responsibility’.
Estella recently applied for NDIS funding to support her mental health. Her application was refused because she did not provide enough evidence.
Estella says she is ‘a fighter’ and will continue to seek appropriate supports for her family.
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.