Travels with my autistic daughter
I was never a particularly big risk-taker before I became a mother. That might come as a surprise to many friends whose address books are littered with crossed entries across my name for the number of countries I have lived in since leaving school. Seven changes, in fact, to mark seven countries. Living abroad, with all its problems and perplexities, has come instinctively to me, much as changing jobs every two years might come naturally for my neighbour.
No, it’s the bigger stuff at home that has turned me into a risk-taker. Before my daughter, Sally, was born in 1998, I had conjured images of her reaching developmental milestones and me enjoying maternal contentment. Nothing out of the box; everything safe and secure. Thirteen years later, my maternal cravings are happily assuaged but I hadn’t factored in autism during any of my pre-natal planning. Caring for Sally, who has profound autism, has made me look way beyond my own expectations of parenting to explore avenues to help her. It’s been an unconventional journey. Along the way, Sally’s father, Michael, and I have enriched our own lives and reached a far more wonderful place than any overseas travel will ever take us.
Sally was born in Sydney in 1998 into the arms of two dedicated parents who wrapped her in layers of love and laughter. Calm and composed, she folded into my arms from the minute she woke in the morning until she fell asleep again later in the day. She stood out as the placid baby in my mothers’ group, while the other infants gave their mothers a good workout with their crying. Yet, years later, it was mine who did the wailing while theirs talked with the polish and precision of children singing in a professional choir.
There were early warning signs that something was amiss with Sally’s neurological development when she was an infant. I can see them clearly now but at the time, swilling about in a fog, I couldn’t see why people were making such a fuss about her. She was just a little behind in her progress, I argued, and we should enjoy her foibles. She would catch up in her own good time. Yet developmental milestones do matter. You should be concerned when your baby never crawls, only starts walking at 19 months, gains words and then loses them, and stares intently at objects and shadows.
Reality knocked me on the head when, at two-and-half years old, Sally went from a gentle and laughing toddler to one who stared motionlessly into space. Hollow rings grew under her eyes and what remained of our child was a tired, lifeless ghost. She distanced herself from everything by repeatedly whirling string, spinning it back and forth all day long. She was not diagnosed with autism for another two years, despite the glaring evidence. In the interim we worked with the label “developmental delay”.
We moved to Canberra in 2001 to take advantage of their special needs services. Sally attended a special needs pre-school unit and then a special school. Her teachers were excellent and she enjoyed a class ratio of between five and eight students per teacher and teacher’s assistant. Yet her progress was stilted and she continued to sink deeper into her own inner world. The pain of hearing Sally’s screams and caring for her endless needs splintered our hearts.
In 2005 Michael was approached to work in Bahrain to build islands in the sea, as he is an engineer. The decision to relocate was easy for us to make because, no matter how much we liked Sally’s teachers, it was clear that she needed a more intense program. Michael and I were also worn-out and needed some relief from the tedium of caring for a profoundly autistic child. In Bahrain it is much more affordable to pay for therapists.
One of the highlights of living in Bahrain was learning about a program called Son-Rise. It is a home-based approach that recognises that children with autism work best at home because they find the outside environment too threatening. I had never contemplated home-schooling before; it was way too left-of-centre for my traditional upbringing. Somehow Bahrain, in its sandy chaos, forced me to brush aside my ideas of education to attempt this novel mode of teaching. When nothing else is working, you learn to take risks.
Sally was home-schooled the Son-Rise way for four years until we returned to Australia in 2010 when she turned 11. The program was child-centred and we learnt to use her motivations to encourage her to play. Ever so slowly, she let us enter her world.
At times her program felt like home-detention, chained to the demands of Sally and her trainers. Yet there were many rewards. Sally started to laugh again, spoke some words, hooked us with beautiful looks and enjoyed days without shrieking.
Son-Rise was not only pivotal for Sally but has helped Michael and me to enjoy her so much more. It has taught us to love Sally for her autism. My compelling feelings for her have always been unquestionable, but I had struggled for many years with her autism. I now enjoy Sally for everything that she might say and also what she mightn’t say. There are no conditions attached to my love for her. It’s been the journey of our lives.
Lisa Nops’ book My Life in a Pea Soup won the Finch Memoir Prize for 2012. It chronicles her journey with her autistic daughter, Sally, across three different countries. It is available from booksellers nationwide, from Booktopia to Dymocks, and your local independent bookshop.