I’ve been a special needs parent for seven years, but I’ve only known it, truly known it, without any doubt, for nearly four. Not quite four years that feel both like a blink and lifetimes. And in those four years, I’ve talked. I’ve talked so much, and yet I keep talking. About my son’s sleepwalking and accidents. I talk about how he’s started asking “why” like a toddler and even though it’s such a late milestone, there’s still such a thrill in hearing it. In my more honest moments, I confess that it also can drive me absolutely nuts. I talk about his wide spectrum of sensory issues, how hard they can be to work around, how it still deeply bothers me that his IQ was recorded so low and while I’m sure that it was a comprehension issue that isn’t even important right now, I hate that this number is on paper that will follow him. I talk and I talk, careful to always remember that this is my voice but his challenges and there’s a line to walk there. That my voice should never drown out his, that despite how necessary it is to speak for him now, his image, his story, is always his first, mine second. And then I talk a little more, paving the way for his voice to take over.
But sometimes it feels like I’m not so much talking as I’m screaming into the void. Sometimes it feels like we’ll forever live behind a curtain, ones that I hung and we have to stay on the other side of. I want to stomp my feet sometimes, shove my kid forward in front of the crowd and point to him while yelling, “Do you have any idea what this child has to go through in order to mostly function in this world? Do you have a clue how hard he works every single day just to exist? He fights, all day, every day, with the very way his brain is wired just to live on this noisy, baffling planet and I bloody my hands to help him. Recognize that. I know it’s selfish and silly and so many other adjectives but please, for the love of everything holy, listen. Acknowledge. Listen to his struggles and my struggles and my fears and his accomplishments. Acknowledge that it’s a lovely and heartbreaking and exhausting fight and it always will be.” And then I scold myself because that’s not the way the world works and it’s ridiculous of me to expect others to listen to me, to want validation, for myself, for him, for autism in general, when it’s not owed to us. But I’m a silly, impossible girl-child sometimes, and sometimes the heart wants what it wants despite logic and reason.
So I put my head down. I focus back on the ground beneath our feet. I keep talking but my eyes are fixed on a safe point; never too far forward, rarely to the sides. Occasionally I glance back, only to reassure myself how far we’ve come. I never allow myself to think of how far we have to go. I keep my eyes trained on him, our cave, and all the things that feel like they’re second nature until they’re not any more, and I remind myself that he’s what’s important. That one day he’ll meet my eyes across a crowded room, maybe while giving a speech I didn’t have to feed him line-by-line, and that’s enough. That’s everything. It won’t matter if no one knew what went into that moment, just how hard we worked for it, that all my talking maybe fell on deaf ears. Because we’ll know. Just like we know mine are the only pair of eyes his meets consistently. It’ll be us, like it’s always been. Like it always will be. Like it’s always gonna have to be, despite how uncomfortable it may make others to hear that. If they hear it.
But then there’s a call. A lovely, unexpected call. A call that starts off with, “Everything is fine. Nothing has happened” and I marvel over how well his principal knows us now, knows to lead with reassurances because most unexpected calls are not lovely, they’re a source of anxiety like every other unknown thing. And the news is everything I’ve ever hoped for, dreamed for, but never wanted to express out loud until it was suddenly in front of us.
My boy, my bright, beautiful, complex boy, was nominated for the county’s hero program that recognizes students from the county for overcoming adversity to achieve success. I try not to cry on the phone as the principal’s voice fills my ear, as she ticks off his accomplishments and the work behind them. Later, at the ceremony itself, his eyes are locked on mine and there’s a medal around his neck and cameras snapping his picture. I only just manage to keep the tears at bay as his teacher, his wonderful, lovely teacher for the first two years of school, tells the room about his struggles, about all the little things I was convinced no one saw, no one heard, and every hard-earned accomplishment. The room applauds when she’s through, they came to listen and to recognize and to acknowledge, and my vision blurs as she hands him back to me. Like she always handed him back to me, seeing and hearing the entire time.
I hum to him that night, later, away from the crowd, laying next to him in his bed. His stomach hurts again. Used to, I had to guess at these things. Now his voice is steady and sure as he tells me. We don’t know if it was from dinner or maybe anxiety. If it’s the latter, he can’t tell me what he’s anxious about. Either he doesn’t know or doesn’t have the words yet to explain it. But we have words, enough to say this, and I have the voice I always used for him to talk and be heard.
I use it to sing “King and Lionheart” under my breath and he smiles that dreamy smile I used to equate with him not connecting. I’m seeing it less these days, or else I’ve grown use to it. He hums the chorus with me, a little disjointed, a little out of tune, but perfect in its imperfection. I don’t know if he understands the words, if they connect for him, if he knows why this has become his lullabye, but he hears them and there’s magic in the hearing. The understanding will come later, for that and everything else.
Tomorrow I’ll talk some more and he’ll wear his medal. The medal will remind me of the hearing, of the understanding. I’ll hang it on the mantel eventually, next to the proof of his other accomplishments, and my eyes will stray to it in the quiet moments. When I’m not talking. It’ll remind me that talking, the awareness that comes from it is important. That there will be people who listen and who see. And every time someone does, it makes it easier for him, for others like him. That it’s our picture and a bigger one and talking pulls back the curtains so others can see them.
I’m gonna keep talking until he can. And then I’m gonna sit and listen.
I can’t wait to listen.