I exist purely and almost perpetually in the present moment.
I show up as I am, and try the best I can. Somedays, I’m not enough. Somedays, I’m far too much.
This is the life of an autism mom.
My boy is my life. Absolutely, my life. Every waking and sleepless moment is consumed by my desire to care for him, comfort him, redirect him and nudge him forwards the best I can. He was indicated for autism – moderate to severe – at 18 months old. But truthfully, we knew as early as three months old, that our son was different. A year and a half on from his initial evaluation, and despite intensive early intervention therapies, he’s still indicating as moderate to severe on the Autism Spectrum.
I hardly ever allow myself to look back to the past. Because ‘Before Autism’, hardly matters anymore. And I almost never allow myself to look forwards to the future. Because the future is so uncertain and everything is a moving target. But every now and then, a high school friend, who graduated and went on to live a reassuringly pedestrian life, will post an old picture of us all hanging out. Arms loosely draped over each others shoulders. All freckles and smiles and long luscious hair. And I’ll find myself trying to connect with my youthful self. The one with her own thoughts and dreams. The one who felt that navigating a classroom full of mean girl cliques and playground bullies was the hardest thing she’d ever face. The one who felt that the sting of first love ended, was the most heartbroken she’d ever be. The one who had no idea she was neurodivergent and kept failing to find her place in this world. The one who didn’t fit in, and acted out to gain peer acceptance. Misspent days, all of them. Because I didn’t know what lay ahead. And while I frittered away my days of relative freedom, and twisted my heart into knots over really silly things, my beautiful boy with severe nonverbal autism, was waiting in the wings.
Though I try to keep focused on our future, I can’t quite see beyond the unanticipated eddies and ungovernable currents of a frothing white water river. There’s no way to know where we’ll be five years from now. Hell, there’s no way to know where we’ll be next week!
I have a shaky relationship with Hope. I always hope for the best and when we struggle, I hope it’ll get better. I hope with all my heart that we are enough. Enough love, enough support, and enough encouragement for our boy. And I’ve hoped to reach milestones sooner than my son is ready to. And I’ve hoped for things that may never be possible. At times I’ve resented the fact that I’ve needed to hope for some things that other people take completely for granted. And with any sting of defeat or loss, I dare to hope that where we’re standing won’t be where we remain. Some days it’s a rollercoaster without a guardrail. And yet that small flame of Hope burns on.
Some people in our autism community claim that it all gets easier as our children grow. Standing here, with three years under my belt, I can honestly say that that has not been my experience so far. Maybe we’re just in a tough season of autism? Or maybe we’re being built up for harder days to come? Hopefully the sorts of days we are currently white knuckling through, will be nothing but a distant memory in time.
Our Threenager is the size of a five or six year old – purely genetics and not a metabolic abnormality. He’s super cute but his behaviors aren’t. Now, when we venture out into the world, I am more aware of other people’s curiosity. And their stares. They can see by the way he moves, some of his affectations, his reactions to people and stimuli, and definitely his verbal stimming, that he is different. Some parents will shoot you a reassuring smile. Some will move their kids away from him. Both reactions compound your feeling of otherness, and make you feel wildly protective of your little boy, who has no idea he’s being observed as “deficient” somehow. I feel that for the most part, I manage the reactions of uneducated people with practiced and curated cheerfulness. I don’t ever let them see struggle on my face. I think that as autism moms, what we really would rather experience is the kind of curiosity that leads to questions, questions we can answer honestly – a dialogue that validates our lived experience, and gives us an opportunity to advocate and educate. So if you see a mom out in the world, closely shepherding a gorgeous little kiddo, warily managing stimuli and social interactions as they go, take a moment to acknowledge her, don’t turn away. A quick and casual, “good job, mom”, will most often be the thing she needs to hear more than you could ever imagine.
In the meantime, I’ve learned to achieve a level of comfort in the perpetual present. A small nod to the past, a wry smile to the future, but our heads in the game in the now. Because sometimes all we can do is put one foot in front of the other until time, experience, and clarity smooth the way forwards.