Lost, levitating and praying to Saint Anthony
The story of the day my two year old daughter was diagnosed as Autistic
There was a silence, a gap in space and time, and for a moment I was levitating.
I had lifted out of my body and was looking down at myself, smiling nervously at the doctor who had just told me my wonderful little two year old was, what he called, ‘Autistic.’
I shut my eyes; Partly to lessen the sting of the tears forming, but also to escape what was happening around me. When I opened them, I was back in my body, now shaking uncontrollably, and the tears falling freely down my burning cheeks.
The doctor handed me a bright yellow post it note with an autism website address on it, his words were muffled by the sound of my heart beating in my chest, echoing in my ears. I can’t remember what he was saying, all I recall hearing was“I know you can’t hear me right now, thats ok.”
My little girl is happily drawing identical squiggles on a sheet of paper, with her little caveman grip on a red crayon, completely oblivious to my inner panic.
I look over at my husband, who looks calm but I can see inside he’s fizzing like a bath bomb, he’s exploding with questions. I wonder if he can hear himself or is he floating unaware somewhere above us too? My first pang of guilt/anger/confusion/grief stabs me in the abdomen, it won’t be the last.
He is such an adoring and unphased dad. We handle things in polar opposite ways, I’m the emotional ying to his analytical yang. He works in retail middle management, with a penchant for brainstorming solutions on whiteboards. How the hell are we going to navigate this brain-storm? For the first time I feel fearful of the future. How do I support both of them, when I have no idea how I’m going to support myself?
Just the journey to this point has left my emotional reserves near empty. It’s exhausting juggling other peoples unsolicited parenting advice, along with being a first time mum and wife, and understanding a two year olds emotional, physical and sensory needs.
The doctor opens his door, signalling it was time to go. Wait, can we just sit in this moment for a little while longer? My thoughts are scattered, my voice is wobbly, I can’t move - physically and spiritually, I feel stuck. The doctor offers a few final, encouraging words - and a book, for sale. We can pay at reception. We float through the door, and settle the bill…
All I want to do is go back an hour or two when life was simpler, clearer, calmer, happier.
We silently walk through the labyrinth of corridors that we had got lost in on the way to the clinic. Located somewhere within a religious retreat in Island Bay, the corridors were lined with portraits of nuns and priests, watching and judging as we went.
At one point my very un-religious husband had even suggested we pray to Saint Anthony, the patron saint of lost things. I told him off for being sacrilegious at the time, but we were the lost things on that day.
Maybe Saint Anthony heard us, I don’t know, because we made it back to the car, without a single wrong turn or dead end this time. We got in the car, for the first time with a label of Autism, with a side serving of global developmental delay, with a possible upgrade to an intellectual disability.
The drive home was long and emotional. Silent tears continued down my cheeks, now cold to the touch.
“Crying isn’t going to change anything,” he says to me in his middle-management retail team meeting voice. He doesn’t mean to sound harsh, that’s just his way. In the moment it hurts, but as the days and months pass I know that his hurt is just as immense as mine, but it just manifests differently to mine.
But in the moment it hurts. It really hurts. I wish I was levitating again, so I could separate myself from these intense feelings.
I look in the rear view mirror and my girl is sleeping. Her beautiful rosebud lips are like the ones painted on a porcelain baby doll. I only see her bottom lip when she sleeps, otherwise she is constantly sucking on it, as she has from the morning she was born.
I’m struck with how peaceful she is, completely unaware of the shit-storm swirling around her. I’m glad. Nothing will change for her, this is just a word to describe the list of interesting things about her that make her… her. There are many things out of my control right now, but this I can control. Her life will be big, and beautiful and I will knock down every barrier that stands in her way. I will walk alongside her for as long as she needs me. That is my solemn oath to you, my girl.
……..
When I search for the moment that signposts the beginning of our journey with autism, I get lost, just like I did in the confusing corridors of the home of compassion, where the autism clinic was located. There were times of aimless wandering, u-turns and a few dead ends. When did this beautiful madness all begin? If you asked my husband, his answer would be different to mine, as it would be for our friends and whānau.
Was it when she was diagnosed? Was it the first time I noticed she was different to other babies her age? Was it the night she was born when she refused to meet my adoring gaze with hers? I don’t know.
Back then, I hoped that over the days, months and years to come that these answers, and many more, would present themselves to us all, unfurling like a fern frond bathed in morning sun. All of her beautiful quirks, that were now categorised as symptoms, would exist without need for labels, which would dissipate like mist as the sun breaks through the forest canopy.
Yet here I am, 13 years later and (mostly) none the wiser. My girl turns 16 this year, and many aspects of autism are still an absolute mystery to me. I am at peace with that.
So much has changed, but that moment remains frozen in time and forefront in my memory. It was the day when we lost and gained all in one doctors appointment.
We lost the privilege of innocence, no longer able to cling to ranges and variations of ‘normal,’ around child development. We couldn't convincingly tell people it was merely tiredness, sickness or a 2, 3, 4 or any age typical thing to explain her reactions. Now we knew ‘better,’ and had a word, a big long list ticked boxes of deficit language and a doctors report that knew better.
We gained a world full of unknowns. The unknown word Autism was the perpetrator holding us all against our will, with a backpack packed with explosives and a timer we could not see. We became scared of our exciting future as first time parents, with another one on the way.
Our rose tinted glasses were fogged up and for a time we couldn’t see a way forward.
As the years passed, our girl continued to grow and unfurl her many gifts and talents, free from societal filters of expectation.
We were lost, but she need not be.
Friends and family came and went, but our family of four built walls around us to keep us safe and a roof to shield us from bad weather, which inevitably came for all of us.
Our house was warm and safe, and a refuge from the storm of high and low expectations that swirled around us. We needed respite - not from autism, because neurodivergence was actually the cement that kept us all together. A commonality, that we now knew was not our enemy, but in fact our strength.
The things we once saw as unknown and scary, we began to recognise in each other, which helped immensely.
The storm passed, and we began to miss the warm sun that would help us all bloom and bear fruit. We four emerged, stronger together.
Our girl blossomed, bursting with vibrant colour.
When I look back, everything was so monotone. If only I had known back then how technicolored a future on a beautiful spectrum would be!
I’m not an expert on autism, I only have my experiences to draw from. I know my daughter, I see, feel and experience her heart. I watch her navigate the world around her and look on in awe as another parent might if their child was discovering their passion in sports, arts or culture. She paints a masterpiece, scores a winning try, accepts a trophy, every time she experiences the sensory world. She is so brave, and tenacious and transcendent.
What a privilege to be her mother. In many ways, she has been my most sage and reliable parenting expert and life coach for all these years.
Looking back to those first few moments alone with the word Autism, I feel sad. Diagnosis and labelling is a necessary evil, for many reasons - funding, support, awareness. But it need not be so traumatic for the person being diagnosed, or their support network.
We embrace and celebrate the world of disability and autism equally and without fear. As parents we can sometimes stray from the path on this journey, we are not lost, no need to call on Saint Anthony for guidance (unless you wish to!) We have our girl leading the way, navigating her own path in life.
Happy Autism Appreciation Month, April 2024.