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• From: news.com.au

through my eyes

Johnny McMahon and Mary Ann Napper with their mother, Kathleen Cropper. Source: Supplied

MARY Ann Napper knew her twin was different, but it was only when she started school without him that she realised how different.

Johnny and I were born in 1946. As toddlers we were inseparable. He had blond curls and large brown eyes and sat quietly, dressed in immaculate clothes, preoccupied with his own little world. I, on the other hand, had straggly, wiry hair and was always messy and getting into mischief.

It was not until I started school that I realised Johnny was different. He went to a special school every day called the ‘Spastic Centre.’ The reason why he didn’t go to school with me was never explained. Once I did ask my mother why Johnny was different.

“He’s mentally retarded and it’s God’s will,” she answered.

My mother told me that Johnny’s brain had been damaged at birth due to lack of oxygen. I was the first born twin and in my child’s mind I believed that I had caused his damaged brain. I was plagued with guilt.

As the eldest of six children, I felt obliged to assume the role of minder. I was unaware of appropriate play skills to interact with Johnny. He arranged his toys in long lines. If I tried to rearrange them he threw tantrums. So I walked away and left him to play alone.

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The twins playing together as children in Wollongong. Source: Supplied

There was an absence of normal family life and activities in our house because we had to be mindful of Johnny’s special needs and avoid upsetting him. As I grew older I felt embarrassed in public places. People stared at us and tut-tuttered in disapproval at Johnny’s ritual and repetitive behaviors such as head rolling, body rocking, hand flapping and head banging. At Mass on Sundays people moved away when we sat in their pew. I was teased at school but I ignored their taunts and pretended not to be hurt by them. I often felt alone. There was no one to talk to who understood what it was like to live with a brother who had challenging behaviors. When I invited friends home to play, they came once but never came again. Johnny didn’t have friends either. Other children smiled awkwardly but were wary of him and stared. He couldn’t comprehend or socialise with them. He missed the subtle messages from facial expressions, eye contact and body language.

During my teenage years I was shy and introverted. Playing the piano was my only outlet for my frustration, anger and resentment. At the age of twelve Johnny left home to live in Brisbane for five years. For the first time I enjoyed having private time and my own space. I made new friends but never told them that I had a handicapped brother.

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Mary helps Johnny cut the cake at their 21st birthday, around the time he was sent to a mental institution. Source: Supplied

In his early twenties Johnny was committed to Gladesville mental hospital. His aggressive and self-harm outbursts increased and my parents could no longer manage him at home. I was studying nursing in Sydney and was expected to care for him. I visited him regularly to take him food, do his laundry and take him out for drives. There were no organised activities in his ward to stimulate the inmates. They just ran amok or were sedated with tranquillisers.

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The twins at 18 months old, before Mary became Johnny’s carer. Source: Supplied

By 1970 I had saved enough money to travel overseas. I needed to live my own life and make my own decisions. I wanted to have some fun. I wanted to escape. At the age of twenty four I travelled in Europe for a year and then lived in London where I met my first husband. When we announced our engagement his family voiced their objections. I had a convict heritage, but worse than that, if we had children they would be mentally retarded. Nevertheless we returned to Australia and married. We had two beautiful healthy children and were happily married for eleven years.

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Born To Fly, Source: Supplied

Johnny had an autism spectrum disorder which was unheard of then and not understood. These children were institutionalised and never given an opportunity to live a productive life in our community. Despite the barriers of communication and misunderstandings Johnny and I have a unique bond. I feel blessed to have him in my life. I sometimes wonder how our lives might have been if he had not been autistic.

Johnny’s life changed too. In 1995, he moved into a group home with ‘The House with no Steps ’ He enjoys independent living and is supervised by caring staff with cooking, shopping and other daily living skills.

Mary Ann has written a book, Born to Fly, based loosely on her experiences with growing up with autism. She says that writing her novella has helped her to work through many unresolved feelings and come to terms with them. Born To Fly is a heartfelt tribute to a boy with profound autism and the woman who saved him. It is based on a true story.