Here we are at the start of another April with cannons going off as the crowd glances our way as a light shines on our life in the name of awareness.
Not a blue light, mind you.
Autism Speaks and their campaigns don’t speak for my son, because instead of supporting his neurodiversity, they would instead spend your donations to scare you. You can and should look up any organization you plan to donate to, and AS is unfortunately one of the most visible, but there are plenty of reasons
why they shouldn’t be.
Personally, if you’re looking to donate then A.skate
is a fantastic nonprofit we have personal experience
with and who are on the ground as they share acceptance through skating. They encourage everyone to just let go and have fun. To just be
We’re a family navigating a world that isn’t one size fits all, and our journey is not for a cure.
Because my son doesn’t have a disease.
What he has, like any one else, is a story. One that is his and not mine. Autism isn’t my story to tell. Mine is just of the mother who is trying. The 22 year-old girl who rocked a tiny, impossible being to her chest. The girl who waited for words and cried out of fear. Held her son’s face and searched his eyes looking for him.
Autism meant one thing when he was two and not talking. When it was screams and grunts and the both of us confusing the other. When I asked one doctor and then the next.
And then the next.
It became something else when we sat in evaluations where strangers tried talking to him using their blocks and crayons and he strained away from their noise and cried. When he paced, because we were going somewhere new and I didn’t know how to explain to him the change and new expectations. When we needed to leave so I picked up the screaming child, holding my tears back and ignoring the sharp looks as I left. When I changed a four year-old’s diaper in a stall. When I didn’t know what he liked or how to play with him and parenting felt like I was on a battered, hopeless ship in an unforgiving sea.
And I’d always been a lousy swimmer.
There was a lot of running after him in crowds. Ungracefully getting down on the ground as I tried whispering soothing words when everything got to be too much. Maybe it was too much. I didn’t know and couldn’t understand the whys of anything, only knowing he wasn’t happy and I was failing him somehow. I offered words to friends who tried to play along with my frustrated toddler. I pulled away and shut out the rest of the world right along with him and would have burned down everything outside of him if it meant getting to him.
He was my center, my chaos, my entire heart.
Then the pieces came together and we were handed a diagnosis and a word. A word wrapped in the answers to questions I’d been screaming at the universe.
A word welded together with the sharp, blurry fears I’d been burying as deep as I could get them in my chest.
I tell you this solely as the mother. Remember that.
My story is of turning twenty-four, having a toddler and being distraught and confused. Racing after him because it was a busy parking lot and his hand got away from mine and calling his name wasn’t enough to get to him. Running scared and battling both the world around us and the wall between us.
Sometimes it feels like those early years are a haze. I can’t grab onto those memories with a steady hand. I had no idea what I was doing like any other new parent, but when I looked up from my sinking ship I couldn’t find anyone else whose boat worked like mine. I was huddled over, trying to read a manual that didn’t have words, shoving my sweaty hair back and terrified of not being enough for this bit of love I was given to grow.
All I had to offer him were my own shadows and doubt.
But in any terrifying adventure there comes a point when you have to accept your fears. Scream them back to the universe until it rips your throat. Invite your shadows and ghosts to dinner and look them in the eye from across the table, maybe give them a short nod, because you’re done pretending them away.
You’re done failing him.
So I stopped looking out at everyone else’s boat and waiting for words. Our cuts turned to calluses and we made our own language.
The diagnosis wasn’t a death knell. Yes, sometimes the fears and worries are all I hear or feel as they gnaw on my bones, because I’m human and I am this boy’s mother. But that diagnosis was also him singing out in relief. He was right here and I needed to listen to him and to hell with the universe.
Phoenix has taught me so many things, but one of the biggest was how to be a total badass. Honestly. The guts to be the sort of sailor who laughs at thunderstorms and throws my insecurities to the wind. He taught me to dust my hands when I fall, smiling at the misstep. Together we kicked aside other people’s milestones so we could read our map. We learned how to celebrate the victories of others while not measuring ours against theirs. To never let another light put us in a shadow, because his is bursting from him as the waves toss us around depending on the day, and all the while we’re sharing grins as we watch the horizon instead of everyone else.
Because of him, I learned how to own my truth and live the hell out of it.
Autism is now the string sewn into the mixed up fabric of our story, making designs and alterations that belong to us as much as our names. It changed who I was simply by being the one lucky enough to be the center of his universe for now. The fears grow and change with us too, but we have and will continue to face them down as best we can. I’m this boy’s Sam, translating and helping him forward as I raise him in a world that can be as shitty as it is amazing and there’s no turning back this rollercoaster.
He’s no longer nonverbal, but his language is still limited for his age and structured precariously on nouns and never whys or whens. He’s in speech therapy in and out of school and has another evaluation coming up. Every morning I dress him from head to toe, which is a test of endurance because he’s almost as big as me and the daily task requires a steely sort of patience as I try to get him to focus on me and stop pulling away because he’s scripting something and waving his hands while I’m trying to button his pants. He’s always tucked away in an imagination that must be bursting with pictures. I still brush his teeth, counting off the seconds for him while reminding him to keep his mouth open so I can get to his back teeth. He pulls away, because he hates the feeling, and it’s a sensory struggle I respect, so we work together as best we can.
He struggles with paying attention to things outside of himself and learning to read and write demands a sort of focus that pulls at his mind and hands like a physical strain working against him. Like he’s fighting the tide just to stay on shore long enough to try to read or write that next word. To measure time he asks me several times a day where the sun is even as he looks out the window at a bright, blue sky. He’s easily distracted and sensitive and 99% of the time his attention is pointed inward so I just call his name until he hears me.
And when he looks at me I see him. Grinning and bright-eyed as he wonders what I need.
He was patient with me as I rebuilt myself in my journey to get to him.
Sometimes he’s loud, bursting with noise as hyper energy spills from him as he runs circles through the house, and other times he’s purposefully quiet because the rest of the world was busy enough. He bounces and shakes his hands with excitement and is learning to hold onto his pencil long enough to finish his handwriting homework. He’s methodical and structured and I’ve learned to read his body language as well as my books. We celebrate our nerdy imaginations and are making strides as we stumble and laugh our way through this crazy ride.
In a lot of situations we’re still the outsiders. But we’re also surrounded with love from the family and friends who hear our music and spin and bounce right along with us.
His name is Phoenix and he taught me how to be one hell of a swimmer.
And one day he’ll be the one to tell you his story.
Be sure to blog hop along and check out my friend and fellow autism mom Micah’s journey with her daughter and their fight for a diagnosis. Also Kristine Wyllys, author and mom, who organized this blog hop and made that fantastic graphic for it. She also supported me through countless writing and parenting moments. Rock star, that one.
Allons-y and happy April.