Luke and Naila
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.
‘My son’s tired. So am I. Childhood is meant to be fun, along with lots of learning. My son is capable of this – but little has been done to modify anything to his needs.’
Naila’s son Luke has attention deficit hyperactivity disorder (ADHD). Naila also has ADHD and, as someone who wasn’t diagnosed until later in life, she knows the importance of early intervention.
‘I was without support at school, and whilst smart I did not have the ability to organise my work. This led to me dropping out of … a law degree as I could just not manage to coordinate things.’
Naila told the Royal Commission people were always telling her to ‘try a bit harder’. ‘[This was] so damaging to my self-worth and self-esteem,’ she said.
Naila finds that people are often judgemental about ADHD, ‘scoffing it’s made up or an excuse to get access to various medications’. So she rarely tells people she has it, for fear of judgement or having to explain herself.
Luke is seven. ‘He’s engaged, interested in many things’ but has anxiety and ‘his working memory speed is slow’.
The school he attends offers very little support. ‘His teacher was surprised with his diagnosis saying, “I didn’t realise ADHD presented like that.”’
That’s because Luke is quiet at school ‘bottling it up until he gets home’.
Because of this Naila fears he falls through the cracks and she has little confidence the school is making any adjustments to suit his needs.
‘The school developed a very poor [Independent Education Plan] without informing me. It’s not been updated since and I’ve asked numerous times over the last 12 months.’
Outside school Luke has a reading tutor who uses a multisensorial approach, and sees an occupational therapist (OT) to address motor development issues.
Naila has to pay for all Luke’s support herself because there is no support from the NDIS for people with ADHD. Naila would also benefit from more support.
‘Strategies that would help my life immensely would be an ADHD coach, an OT, some support at home. I'd be able to work and contribute more if I had these. I've sometimes self-funded these but it becomes expensive and I can’t always afford it.’
Because Luke receives limited support at school he often cries and tells Naila he doesn’t want to attend. ‘He started saying things like “I am dumb or I am not good at that.” It was heartbreaking.’
Naila says that unless children, families and educators are given adequate support there will continue ‘to be a stigma attached to ADHD’.
‘People will not reach their potential and end up with mental health problems such as anxiety and depression.’
Naila hopes in future the education system will be ‘more inclusive and dynamic’ and support all learners.
‘The long-term impacts of no support across a life span is pretty awful.’
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.