The paediatrician smiled kindly at me. “We’re hoping you’ll be able to tell us,” she said. I stared at her, unable or unwilling to comprehend. Surely this wasn’t her answer to my question of how we help our daughter, Tallulah, with her now officially diagnosed condition of Autism?
This woman was the specialist, if she didn’t have answers who would? I looked at the occupational therapist sitting to the doctor’s left, then at the child psychologist on her right waiting for them to offer me some suggestions, some cold hard medical facts, their informed opinions, even some good old fashioned advice, something – anything. But they just gazed at me with sympathetically tilted heads and sad smiles. “We don’t see a lot of girls with Autism,” the doctor went on, “and we’re only starting to do research now so we won’t have any results or answers for at least 10 years.”
There it was then; confirmation of our unspoken fears that we were going into this unchartered world alone. With no family support and our recent move to a small rural town where we knew no one, my sense of utter isolation, fear and disbelief twisted my insides into icy knots while my brain overheated trying to understand what I was hearing. I looked at my husband’s devastated face. He looked exactly how I felt.
It felt like a death sentence had been passed on the bright, shiny future we had imagined with this sweet little toddler who sat at my feet meticulously lining up rows of toy cars. All our plans and hopes for us as a family seemed in that moment completely dashed. But what that moment really marked was the beginning of an extraordinary journey; one that would take us from emotional despair, isolation and frustration to a discovery of everyday joy, unexpected laughter and profound insights.
I immediately began researching everything about Autism but it made for depressing reading. There was little available information about Autism in girls and what I discovered about the condition in boys bore little resemblance to Tallulah’s behaviours.
Believing that help would come from outside we tried various specialists to help her with her almost non-existent speech. We took her to see a recommended and very expensive speech therapist in Canberra who had had success with boys with Autism. However, if I needed proof of what worked for boys wouldn’t work for Tallulah, I had found it. Traumatised by this therapist’s tough, bullying methods, we grabbed Tallulah and fled the appointment.
“Home, Mummy, home,” was all our normally silent daughter could whisper between sobs. This harsh method may work with Autistic boys but it was devastating to a sensitive little girl who wanted to do what was asked of her, if only she could understand it.
It was then I decided to stop. I stopped combing the internet, I stopped reading the books, stopped asking advice from professionals, stopped being part of on-line groups and decided to let go and let Tallulah become the teacher. I realised I only needed to be an expert on my daughter, not on the causes of Autism or how it manifested in others.
We removed her from anything and anyone that caused her discomfort. She attended preschool a few days a week but outside of it we closed the door on the world and voluntarily isolated ourselves allowing Tallulah to guide us on how much interaction she wanted with the outside world, with whom and when.
“You’re taking a big risk; she could regress and become even more anti-social. Then where will you be?” One ‘professional’ warned me.
But it just felt right. Overnight, we went from being the teachers to being the students. By letting her lead us, ensuring she felt safe at all times, her confidence blossomed allowing her to develop a natural curiosity about her world, a passion for drawing and dancing, her quirky humour and a healthy obsession with Dorothy the Dinosaur. But most importantly, she discovered her voice and the power of words.
There were many times we struggled. My best friend of 30 years informed me I had become “...too emotionally needy” before dumping me. He was right; I was often desperately lonely. But the relief that came from Tallulah’s happiness and remarkable development made it all worthwhile.
Trusting Tallulah and letting go of the belief that as adults we knew better than her has made for a joyous experience with this extraordinary child. She continues to teach us to notice the detail and minutiae of our daily lives; shapes, textures and patterns, the play of light and shadow and the layers of sounds and rhythms from city streets to our own back garden.
Tallulah forced us to slow down, to really look and listen, not just to her, but the world around us and she has enriched and united us as a family in a pleasure in life and each other that we could never have imagined. She has also taught us that there is not much in life that cannot be diffused or even defeated by a good set of crayons, dancing, laughter and Dorothy the Dinosaur.
“Grown don’t mean nothing to a mother. A child is a child. They get bigger, older, but grown. In my heart it don’t mean a thing.”*
As our children grow and become more independent, we might become a wee bit complacent about their existence, lost in the daily grind and focusing on the world outside the home. But it doesn’t take much to realise how shockingly fragile human life is, and how quickly childhood will be over, though the connections and feelings that bind us will remain for eternity.
* Tony Morrison (American novelist, editor, and professor)