HEARING WORDS OF LOVE
When her deaf daughter Amelia, now aged nine, developed strange habits and began to show signs of aggression, author MELINDA HILDEBRANDT went on a mission to find out why
When I found out my daughter was deaf, I was deeply shattered. But when she was diagnosed with autism, my reaction was, “Oh, thank god.” Let me explain.
My husband and I didn’t know Amelia was deaf or autistic when she was a baby. She wasn’t tested for deafness [in 2009] when she was born – they were still in the process of rolling out the Victorian Infant Hearing Screening Program for newborns. Over her first two years, she was super-responsive, but her speech development was sorely lacking. After a series of tests, she was diagnosed with permanent severe hearing loss. It explained why she hadn’t been speaking, and why she was always off in her own world – which we didn’t realise then was also behaviour associated with autism.
Over the next two years, Amelia grew more frustrated. At first I thought it was her hearing aids: adapting to new sounds, and trying to speak. But she became more aggressive. She would have massive meltdowns; tantrums don’t begin to describe them. There was also a lack of eye contact and other strange things – she couldn’t stand the feeling of warm water on her body and she hated to be touched. I couldn’t understand what was going on, and I wondered if I was overreacting.
Finally, when she was four, we saw a paediatrician who happened to specialise in deaf and autistic kids. After about five minutes, she said, “OK, there’s definitely something going on here.”
I think others had been thinking something was going on with Amelia, but no-one wanted to be the one to say it. People would rush to reassure me she was “fine”. But I didn’t want people to make me feel better; I wanted them to help me find the answer. One person told me later they’d thought there was “obviously something wrong” when Amelia was about six months old. I don’t know how well I would’ve taken it at that point, but later, when I felt like I was screaming in people’s faces and felt like I was going crazy, I wanted someone to just tell me the truth. That was why I felt relief when Amelia was found to be autistic. Finally, there was an explanation.
Amelia loves the book I wrote about her – not that she can read it yet! She is an outgoing person, which is why she loves the attention. She says, “We’re so famous, Mum.” I just laugh. One day, when she realises I wrote about her toilet training, she might not be so impressed. Amelia & Me by Melinda Hildebrandt (Agincourt Publishing, $30) is out now.