My story of exploring endurance as an 'autism momma'.
I am standing at the Air Canada check-in with my son. Both our winter coats are draped over my arm, and my purse which feels as though it’s full of cement is digging into my shoulder. Our suitcases and pet carrier are ready and waiting at my feet. The attendant is explaining that the already cancelled, re-booked and now delayed flight is over-sold and our seats are not guaranteed. Greyson is leaning on the counter humming, his gaze fixed on something in the distance. He has gathered a lock of his hair between two fingers, his other arm slung over his head, fingers moving back and forth over the ends he is holding. It’s what he does when he’s tired, his way of comforting himself. My eyes are fixed on this woman who is describing a situation I cannot process. “Are we going home Momma?” Greyson asks. This question has been on repeat for the last 24 hours. I start to cry. I have been fighting back tears for the last few days, there’s no stopping them now. This is a scene from my life and not a singular episode. This happens regularly, the moment I lose my determined-and-sure-footedness. The moment I go sliding down the edge of the cliff.
I call myself an “autism momma”. I am also a woman in recovery, a yogi, a writer, a builder, a creator; a human who is still learning life lessons, feeling each one of them in every single part of my being. And lately I have been thinking about the idea of recovery in relation to my journey as a mother of a child with special needs. I have been thinking about endurance – a quality that comes to mind when thinking about long distance runners and swimmers. It’s the word I see when I close my eyes and ponder what it means to be parenting my child. Parenting in general is heart-wrenching, soul-wringing work. In those weeks before I became pregnant, I recall telling a friend that I was ready to grow into the next version of myself. How could I have known what was to come?
Greyson was diagnosed at the age of six, years after we knew that something was not right with our son in comparison to his peers. Hearing the words “your son has autism” was like a bomb going off in our faces. Any relief felt in finally knowing, was blown to bits by the force of what that meant. There was no fixing this. It was forever. How did this happen? What did we do wrong? What do we do next? Only now, seven years later do I realize that I would learn to live with unanswered questions and uncertainty; that I would learn how to accept the unacceptable. And that I would come to know endurance as much more than a quality of strength. To endure is to bear, tolerate, undergo, sustain, experience, withstand. The practise of parenting a special needs child is an exploration of all these versions of the word with the knowledge that this practise does not end.
Studies have shown that parents of autistic children can actually suffer a form of PTSD with symptoms of “hypervigilance”, defined as an enhanced state of sensory sensitivity, a high responsiveness to stimuli, and the constant searching for threats. Life with Greyson means regularly navigating anxiety and meltdowns in very public places with eyes and judgements raining down. We don’t go anywhere near crowded events because of overstimulation and his perceived sense of assault. Even a playground with a few kids on the swings is daunting. We only eat certain things and in certain places. We get stuck on sounds, words (every swear word you have ever heard) and songs, and they play on repeat for hours, days, and weeks. We don’t socialize with other families much. I am constantly at the ready to remove my son from a situation and constantly in battle with the knowledge that I cannot shield him from life. In my worst moments, this life feels relentlessly exhausting. In my best moments, I celebrate the fact that Greyson has come a long way. And so has his Momma.
I stopped abusing and self-medicating with alcohol (and other behaviours intrinsically linked) four years ago with the help of a 12 Step program. I changed my life through practises such as yoga, meditation, and the study of various spiritual concepts and programs. And I am experiencing the remarkable benefits of making these changes. It’s not easy – life still happens. My son still has autism. But there is no doubt in my mind my recovery has given me the tools to endure life’s challenges, along with those specific to a life with autism. And this brings me to recovery: the word “recovery” almost insinuates that at some point, you’ll move on to “recovered”; you’ll have gotten back all your missing bits; have found everything you lost; you will be found. My journey as an autism momma sings a slightly different song, a never-ending song. And I know I will be thrown backwards into a first verse, a refrain, repeatedly. The song will be a constant hum in the background, a familiar soundtrack. But it will also crescendo and come crashing down on my head on a regular basis, filling me with anger, hurt and self pity. I can never fully recover from this. I can only learn to endure and prepare for the next time. And that is where my recovery and my endurance meet and walk side by side: in the constant movement of acceptance, patience and surrendering to what simply is. Through all of it, I maintain hope.
“Hope” is the thing with feathers –
That perches in the soul –
And sings the tune without the words –
And never stops – at all – Emily Dickinson
These days I am grateful to belong to a community of amazing women. I am intrigued by the diversity of stories and experiences; I am humbled by what we all share. I am witness to the conversations and connections made online and in-person. And I am in awe of the strength and support these women conjure up for each other. Perhaps these words are my first steps towards creating and offering some space to another woman who is struggling to simply endure. Perhaps we can share this space, the silence and the knowing, a soft conversation or some noisy recognition. We can continue to endure with any amount of grace we can manage to cobble together in those difficult times. In this endurance, we will find ourselves. And after that, we’ll simply keep going.