Finding her way through the fog
An unexpected journey ...
There are some stories that stay with you long after you finish reading them. They are usually the ones that make you stop and take stock of your life. My Life in a Pea Soup by Lisa Nops is one such story.
The past twelve years of Lisa and her husband Michael’s lives have been marked by many things – the arrival of their much-longed for daughter Sally, living for several years in Sri Lanka and Bahrain, meeting new and colourful people – but nothing has stamped its influence so profoundly on that time as Lisa’s battle to come to terms with her daughter’s profound autism.
In the past I viewed autism as something that robbed me of Sally’s personality, but not anymore.
Today, Lisa can see how far she has come since the years she spent lost in her pea soup of confusion, fatigue and helplessness.
“I think when you receive a diagnosis of autism you sometimes feel like you have no control of your life. The title of the book is how I summed up how I felt about living with a severely autistic child. Being in a pea soup was, for me, the equivalent of being lost in a fog,” she says.
While she admits the book deals a lot with the heartache and disappointment of that period, it was really the wacky characters that managed to find their way into her life, and the many surprises that came with living abroad, that really inspired her to write their story.
“It was a hobby, really, but at the time I was living in the Middle East and running a home program for my daughter, and so many things in my life seemed so out of the box and bizarre that I just had to write a story about it,” she says.
Heartache aside, My Life in a Pea Soup is a beautifully written and entertaining read. The tales of their time abroad are at times very funny, and the honesty with which she approaches her struggles along the way is refreshingly relatable.
As you travel with Lisa along her journey you can see that her turning point was finding a program that offered her hope. The SON-Rise program, a one-on-one, home-based, child-centred approach to developmental disorders, helped her come to terms with Sally’s autism.
“In the past I viewed autism as something that robbed me of Sally’s personality, but not anymore. I think the SON-Rise program helped us through all that,” she says.
“I came to the conclusion that you can’t fight autism. There are days when I just begrudge it but they’re not good for me or my family, so I had to choose to accept it and find happiness. I know that sounds very simplistic but it is,” she adds.
While Lisa is confident that SON-Rise helped Sally’s autism immensely she acknowledges that it won’t be suitable for everyone.
“It really depends on the child as to what method works best, but with Sally the child-centred approach is what she needed.”
Even though Sally’s autism has improved, the 12-year-old always faces setbacks in her progress.
“Developmentally, Sally is probably around the same as a one-and-a-half-year-old. Her autism used to be the main problem but the SON-Rise program actually helped reduce a lot of her more challenging behaviour,” she says. “Her biggest challenge now isn’t her autism but her intellectual impairment.”
But Lisa has learnt to take each day as it comes, which is why she tries not to think too much about the future – or, more precisely, the day Sally finishes school.
In spite of the growing number of children being diagnosed in Australia – currently one in every 160 children has an Autism Spectrum Disorder (ASD) – our country is far from the forefront when it comes to treatment, care and support. Especially once an individual reaches adulthood.
“At the moment when kids graduate from school with high level disabilities they aren’t properly looked after in Australia. I think the government needs to show us they are going to supply the level of support needed to give us a future. Not just for the kids but also for the primary carers because we can’t work properly or be involved in the community like other people,” says Lisa.
Understandably, this bleak outlook makes it hard for families like Lisa’s to look forward to the future.
“That always worries me. Not so much caring for Sally, because I love her to bits, but when you know you’re supported you feel a lot better,” she admits.
Unfortunately Lisa suspects it will be a long time before families in Australia see that level of care. But she advises that there are many things parents of autistic children can do today to help ensure their kids have the best possible future, starting with early intervention, finding the right therapist and a good school. But even before all that, she says the most important thing you need is someone you can rely on.
“It is very isolating being a primary carer, but if there’s someone in the background, like my father was, who really supports you, the journey is made that little bit easier. You just need one person you can turn to for help,” she adds.
Without that help Lisa isn’t sure how she would have made it through her pea soup – but she has.
“I did feel like I had been robbed of a child by this awful thing called autism, but now I live with autism. I’m happy living with it and I am a mother of an autistic child. I have accepted that autism is a part of Sally now. That’s just who she is.”
My Life in a Pea Soup, published by Finch Publishing, $29.99 is available at www.finch.com.au and all good bookstores. Winner of the Finch Memoir Prize 2012.