If you know me, you know my story pretty well at this point. The mom, the reader, the writer, the lazy crafter. And you know that in some circles I’m referred to as an autism mom. My son is in an ASD class and his curriculum is classified as alternative. He has a list of sensory issues and struggles with verbal communication, and when he comes home I get snippets of his day from what he tells me, the rest from his agenda and what he shows me, so when it comes to the conversation of autism, my part comes from sitting beside him.
Eventually behind him.
My voice is of the observer and advocate. Of the tired fighter sometimes, because I’m Mom, and I’ve had to go a few rounds in his name. But he’s not a baby anymore. The conversations we’re having, living, and stumbling through are growing up. They’re about school curriculum and IEPs. The burgeoning independence that comes with adolescence. Life is about him turning eight and planning for life after elementary school and the question of diplomas. Our discussions are about goals, struggles, and an entire team of educators and therapists sharpening and welding together every last tool I can find to help him become a self-advocate. I’m listening to others. Adults who have walked my son’s path. I’m listening, curious and hungry. Trying. I’m always trying to learn new skills, new ways to discuss and learn from him. I’m still reading beside him, checking over his spelling words, throwing him high-fives when he beats that new level on his game, and skillfully moving around him as he runs back and forth down the hall, working off his day.
Here in our cave, in our home base, it’s just us. We’re the narrative. But thanks to places like Twitter, I’ve come to realize people are a little tired of hearing from me.
That’s disconcerting at first.
In the conversation about autism, the parental voice has been noted. The focus leans so heavily on the early stuff. The When They Turn Two stuff. The hours of therapy one should be getting or else You’re Not Doing Enough. Personally, a lot of my son’s time is unstructured. Because he’s seven and gets to play and be bored, too.
The thing about autism is that more often than not, we’re listening to the support team, and not the person they’re all standing around. The world is looking at these kids as problems that need to be fixed. My son is growing up in a world where he has to develop a tolerance to discomfort just to get by. And that’s kind of terrifying to a mom who wants to build him the smoothest roads, find him the best of friends, and convince him that green vegetables are delicious. I can’t build him an easy life, and I let go of trying to find answers from neurotypical resources. But truth be told, it’s hard sometimes to connect the eloquent voice of autistic adults with my son and his struggles, because he’s still so young. But he’s growing up so fast. I’m straddling old fears with ones further out I can’t see yet. But it’s about him. I’m a neurotypical person connected to the autism community, but I am not autistic. So I did the only thing I could when you care so much, but aren’t part of that group: I sat down and listened.
They want to know what my son thinks. What he wants. What he’ll do when he’s older and if the world is doing enough to make sure it’s ready for him and his classmates. Everyone is tired of the sad mom stories, the campaigns driven by fear, and the dismissive attitudes. They’re tired of a toddler and his long-faced mother being on every poster, stirring pity instead of acceptance. They’re damn near exhausted of being told they’re not whole people.
They’re fighting for their lives. They’re fighting for his future. Because if the conversation grows up, if the concerns and support go beyond toddlers and pediatricians, toxic “cures” and campaigns, then the world might be a little less scary for my son as he grows up, too. He is not a problem, and he is not a canvas for someone else to paint a sad story or to be anyone’s inspirational sidekick.
You want a story about a mom? Fine. Cool. I’ve got one of those. You want one about a Latina? Okay, I can personally talk about that. And yes, my story has been tremendously shaped by not only being a mother, but being my son’s mother. I love him so much my chest could burst, but I’m not claiming this sword or his voice as mine. I’m here to raise him. To honor who he is as a person every step of the way. From the baby I cradled to my chest to the adolescent who still holds my hand sometimes. I’ll never stop or apologize for fighting for him, supporting him. I’ll never stop trying to become better for him, and that’s a whole other tale deserving of its own place, but not before or at the expense of his.
The fight for neurodiversity and autism acceptance belongs to us all, but the sword and seat at the table are his.
In the quest to listen to important voices in the conversation about autism, a great place to start is with the Autistic Self-Advocacy Network. They’ve compiled a great list of resources for Autism Acceptance Month: http://www.autismacceptancemonth.com/resources/
A great group that’s near and dear to our family’s heart is A.skate.