Today was my sister’s birthday party. She was there the day my eldest son was born. They adore each other. He was excited about going to her party and dressed up for the occasion.
As we arrived, he said quietly, “I need space today”. While everyone was celebrating outside, he moved inside, and sat with his iPad, watching episodes of his favourite TV show, ‘Paw Patrol’. I watched him through a glass door. He was looking at his iPad intently, and smiling. When he was ready, my son jumped enthusiastically in to the pool with our extended family. He’s just taught himself to swim and was diving and splashing and enjoying his family’s company. Later, when lunch was served and everyone got out of the pool, he whispered to me “the food smells”. He couldn’t bear to be near it and sat away from everyone again, watching another episode of ‘Paw Patrol’ and eating a vegemite sandwich. He was so involved in his iPad, he didn’t notice us singing Happy Birthday. My family realised he missed out, and asked him to join us. He ran over excitedly, the candles were re-lit, we sang Happy Birthday again and he helped his favourite Aunty blow out her candles. We ate cake and left straight away. It was, all in all, a great party!
I realised in the car on the way home, that this day would have been so different only a year ago. I would have felt the pressure of family and my own expectations, and not allowed my son to bring an iPad to a birthday party. My boy would have had no retreat from the social pressures of a family party with lots of happy chit-chat. The smell of the BBQ meat and the noise of my family sharing a meal around a table would have been unbearable. Inevitably, he would have started running around and squealing, perhaps singing loudly, bumping in to people, and knocking things over. He might cry or yell. He wouldn’t eat. In the car on the way home, I would have complained about his behavior and felt frustrated and sad that we couldn’t take him anywhere and that I hadn’t been able to spend time catching up with my family.
The difference between last year and this year is not my son. He has developed new skills and grown taller, as little people do. But he is essentially the same bright, energetic, family-loving boy we adore. The difference is absolutely the way the adults in his life, his mums and his extended family, know him and accept him. My son was diagnosed with ‘Autism Spectrum Disorder’ last year. He says he has an ‘autistic mind’, and we don’t consider his incredible mind disordered.
But back then, in those early days, his diagnosis was a shock. It filled me with fear and grief. A grief that was strong and sat with me for many months, like an unwelcome guest that visited our house each evening, when our three kids were in bed; and I cried.
As I emerged from that place of deep grief, I started reading. I began with books by professionals, about helping my kid to ‘improve’. Then thankfully, I kept reading. I learned about neurodiversity. I read the words of autistic adults written in blogs and books. Their words were powerful. They pushed through my fear and settled gently in my mind and my heart. I realised my boy wasn’t much different from me, with his struggles with social events and aversion to smells. How could I be so frustrated with parts of him that were simply childlike parts of me?
My boy was not a handful, hyperactive, or naughty. He was actually a child coping incredibly well under great pressure. A child that needed to be listened to, and encouraged. As all children should.
And so, this past year has been one of learning about and listening to my child. It’s been a year of discoveries. Of finding and sharing the things that bring him joy and make him feel safe, and figuring out situations that are challenging.
With that comes a new and different, unsettling feeling. It visits me on days like today, when we have a big social event that is fun, when my children find their own ways to enjoy being in their extended family’s presence. When I think of the mother of a year ago who was pushing her kid to fit in and pass as neurotypical; to sit still, to be quiet, to eat a meal with a group of people, to answer adults’ questions and say hello and goodbye. I think of a little boy who was trying so hard for his parents and couldn’t say “I need space today”.
It’s a bit of guilt and regret and a big dose of sadness. It hits me in waves.
This too shall pass, I know; and there still, shall remain my firstborn. A little taller. But essentially the same bright, energetic, family-loving boy we adore.