Biggest challenge our greatest joy
by Kirra Lewis
We suspected early on that Asher’s development was progressing differently to that of his brother and peers. After months of questioning our parenting, we sought a diagnosis. What was then called ‘Asperger’s Syndrome’ (now diagnostically referred to as ‘autism’) was confirmed when he was three.
In the early years, Asher struggled with anxiety, meltdowns, misunderstandings, sleep disturbance and disruption to routines. Life was complicated and perplexing. In his world, shoes made his feet scream, tags on clothing were like mosquitoes biting and bright lights hurt his eyes. Raised eyebrows were confusing.
These days, Asher’s feet still scream but he has learned to manage the sensation. At school, he does very well in the classroom with its clear rules and routines. But the playground is a jungle of unpredictability, filled with loud noises, strong facial expressions and bizarre social rituals. What we find easy, even fun, for Asher can be torturous and exhausting.
The early years were tough. But as we’ve all grown and matured, Asher too has grown to become absolute colour and life to our family. He has wisdom. He has insight. He’s funny. He knows who he is and how he is wired. He looks at us ‘neurotypicals’ and thinks we’re weird in the way we think – and maybe he’s right! There is such beauty in autism. It reminds you that there is more than one way to approach things. Order, routine and predictability have their place. So, while parenting can be a hard slog, there is so much to learn and gain through the process.
As soon as Asher was diagnosed, we were galvanised into action. As limiting and destructive as labels can be, this label provided much-needed answers. We figured out which therapists and support services we needed and got to work.
It has really helped him to see a psychologist, working on emotional awareness and regulation – getting Asher’s ‘engine’ to run not-too-fast and not-too-slow. Occupational therapy helped with everyday skills, like putting shoes on those screaming feet, gripping a pen or getting into a swimming pool. And there was speech therapy, social skills groups, sensory programs, and the list goes on.
Of course, this has an impact on family time with our other children and as a couple, and really stretched our capacity to cope. There were times I parented out of frustration and exhaustion, as opposed to being the Pinterest mum I really wanted to be! Those times taught us about forgiveness, as I needed to seek my children’s absolution as well.
Having autism in the family also affects siblings. Elijah just wanted a traditional brother who would kick the footy with him and run barefoot in the backyard. As the eldest, he often carried the burden of being the one to compromise to help Asher navigate his world. Our youngest, Aliya, naturally fell into the role of nurturer and social worker. From a very young age, she would alter her play expectations and needs to accommodate Asher.
We also learnt that therapists and counsellors weren’t just for Asher. Each of our children have benefitted from processing their experiences with a professional, as have Rowan, and I. Having a child with additional needs can add pressure to a marriage. In the harder years, with a pre-schooler, a baby and Asher in-between, nothing was ever easy or uncomplicated. If someone had told me everything would be okay, I wouldn’t have believed them!
Today I am astounded by Asher’s maturity, creativity, and his capacity to cope and understand the world.
A ‘product’ of Lutheran congregations in Melbourne’s east, Kirra Lewis is Community Education Officer for Australian Lutheran World Service.