Maximilian, Rodrigo and Petula

‘There was just a complete lack of understanding of what was happening to him. And he was just seen as a 'problem child'. A child that had behaviour issues and really needed some discipline.’

Petula is the mother of two boys with intellectual disability. Maximilian is in his early teens and has Down syndrome. The younger son is Rodrigo.

Petula chose ‘a very inclusive path’ for both boys, but a couple of years after Maximilian started primary school she saw ‘red flags’.

‘There were certain procedures and protocols that they had for children with disability,’ she told the Royal Commission. ‘They were doing special things for him that were a barrier to his academic and social inclusion.’

The school was pulling Maximilian out of class every day and putting him in a special education program.

‘They see it as more valuable doing, yeah, the targeted intervention in the special ed teacher's room. And I'm asking for that not to happen.’

Petula wanted reasonable adjustments so Maximilian could stay in class, but the ‘non-inclusive practices’ continued. For example, he was being excluded from library time and put in a sensory room.

When Rodrigo started a couple of years later, the same thing happened. He’d just been diagnosed with developmental disorders including apraxia and dyspraxia, but Petula insisted he have an inclusive education.

‘So I was saying I didn't want my boys taken out of language class, because I felt that was really important that they went … like all of the other children.’

Petula tried to speak with the school about it.

‘My opinion wasn't respected or appreciated. I was often made to feel like I was making decisions that were jeopardising their wellbeing and their education.’

With Rodrigo, the exclusion ‘got a whole lot worse’ and his ‘anxiety and behaviours started escalating’.

‘I was doing everything to try and provide evidence for appropriate adjustments and it just all seemed too hard or unreasonable. Even just in terms of little strategies, asking that he do his work on a laptop because he found it very difficult to write.’

In year 2, ‘things started to really unravel’. Rodrigo was starting each day in a room next to the principal's office after playground incidents of Rodrigo ‘kicking or throwing or pushing’.

‘And we ended up just in this vicious cycle of behaviour and consequences. We could see the anxiety growing, skin picking, couldn't get to sleep at night. It just became unmanageable. He was in a bad state.’

Instead of helping him, teachers took issue and gave Petula a regular run-down of his bad behaviours.

‘After the countless number of meetings that I've had to try and explain how he needs support in those situations. And then to see that the approach is to make him sit in the corner or to tell him that he's rude. I could just see how poorly the situation was managed and what an unsafe, unsupported environment that he was in.’

Meanwhile, Petula said, the education he was getting was ‘ridiculous’.

‘And the number of times he begged me not to go to school, how he could've been learning a new thing …’

Even moving to a small rural school, the boys ‘couldn't escape the behaviour protocol’. The school used a sticker chart for ‘rewards and consequences’.

‘Which again resulted in school refusal, escalations after school, meltdown after meltdown. [He was] covered in sores because of just picking his skin constantly. So that whole system just was not conducive to his disability, I guess … It was extremely distressing to him and causing him harm.’

Recently Petula started homeschooling Rodrigo. She says he’s thriving.

‘Because it's an environment where he can be himself and feel as valued as everybody else. And he's not identified as being the naughty child that isn't as smart as everybody. He has freedom over his own self and his movements and he doesn't feel trapped. And so, for that reason, he's learning more.’