Lilah
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.
Lilah, mid-50s, has attention deficit hyperactivity disorder (ADHD).
When Lilah was three, doctors told her mother she was hyperactive and gave her an epilepsy drug ‘to calm [her] down’.
At school she tried to be ‘appropriate’ and ‘a good girl’, but was ‘always in trouble’.
She told the Royal Commission this was ‘quite devastating’, and no matter how hard she tried it was never good enough.
‘I grew up feeling really bad about myself … It had a really bad impact on my self-esteem and my self-worth.’
By the time Lilah was a teenager, she ‘was struggling’ and started experiencing depression and anxiety.
‘I put myself in harm's way … and was raped … and then I developed an eating disorder, an alcohol problem.’
Lilah said by the time she was 18 she wanted to suicide.
She travelled for a couple of years and then went to university.
‘Although I did well … I didn't reach my full potential … As much as I worked on myself and stuff, it felt like there was always something missing … I still would make social mistakes no matter how much I tried.’
Lilah got married and had a son, Mikey. Not long afterwards, the marriage fell apart.
Mikey struggled at school. Teachers told her he was being deliberately naughty, but Lilah didn’t agree.
The school started making judgemental comments about her parenting style. She knew Mikey’s behaviour had nothing to do with her parenting because she was ‘doing everything by the book’.
‘I started reading about ADHD and started thinking to myself, “I'm absolutely sure this is what's going on for my son.”’
Lilah took Mikey to a paediatrician who suggested she should also get tested.
Tests confirmed both Lilah and Mikey had ADHD.
‘I literally fell apart. I was so scared that he would have an awful life. I wouldn't wish that on my worst enemy. I don't want any other child to ever feel the way I felt about myself.’
Lilah had counselling, quit her job and did an ADHD coaching course. The course was ‘crap’, so she started to do her own research.
She began helping other people with an ADHD diagnosis.
‘The aim is to, as far as I'm concerned, to get kids and adults to learn how to set themselves up for success and protect themselves from harm.’
Lilah and Mikey both take ADHD medication.
‘Without medication you can never get to know yourself, you can never become confident at regulating … When I first took medication … it was like this space appeared in which I could stop and think for the first time.’
Mikey has also developed anxiety and depression but ‘his self-esteem is intact’. He puts post-it notes everywhere to remind him what he needs to do. Lilah says he does it in an ‘empowering way’ not a disempowering way. The notes help him ‘scaffold’. He doesn’t have to feel bad because he forgot to do something.
‘He is going to be okay. It's not an easy life, having ADHD, but … [he’s] got self-awareness, self-acceptance.’
Lilah is doing a postgraduate course studying ADHD.
‘This is too important. I can’t have kids experience what I experienced … It has to change.’
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.