The clouds have been more than intermittent. Some days, I can’t see the sun at all. It rains off and on. The windshield on my car is dirty and full of spots that obscure my vision. I can’t wash them off with a spray of washer fluid because that is broken on my car. So when I try to wash away the dirt, it smears, and I hear that scraping sound that sends chills down my spine like fingers on a chalkboard. One minute I’m freezing. The next it’s hot.
With the humidity from the spring rains, the car smells like urine. Yes, you read that right. That’s what happens when there is a seizure. I’ve scrubbed the floor but the smell has not gone away. It’s okay when it’s not stuffy outside or hot. But when it’s either of those, which is most of the time these days, then I’m treated to a reminder about differences.
Our fairly new senior tutor announced that she believes she’s mastered compliance with my son, this week. This means she believes he is listening to her instructions. She offered to try to generalize this feat in different environments. Ride around with us on errands to check that he listens to her other than in the environment he’s used to “complying” in. I put her off it, saying we had no errands to run. The reality is that I don’t want her in my car, smelling urine as we ride around in the humidity and heat. And she is our tutor. She knows and understands. But regardless of “knowing” and “understanding”, how can I offer a ride to anyone when my vehicle smells like urine, right? It’s a bit depressing. Long after ideas, plans, and goals are discussed and cerebral loftiness is praised and honored, my carpet still tells a different story. The parts no one wants to discuss. The stains that don’t go away.
I could pretend our autism is just the beauty in my son’s eyelashes, his gentle demeanor, his sweet smile and kindness. But the reality is that it’s just as much the incontinence, the seizures, the inappropriate screaming he does when he is excited by a game, the delays or absences in a response back when I talk to him. It’s really all of it. And lately, the clouds obscure my skies. The windshield of my mind is not clear and I cannot wash away the parts I don’t want to see.
I’m not writing a fairy tale. Once upon a time, I started this blog with some ridiculous idea that I could bring awareness to people who don’t know about autism. That was at a time when autism, as I knew it, was a fledgling, sprout, fresh from a seed, I didn’t recognize. When one Googles autism, you get nearly 12 million results in the blink of an eye. Who is going to come here to get “aware”?
I’ve been writing for two years. I’ve been criticized, praised, sympathized with, empathized with, pitied, hated and ignored. Everyone affected by autism, has an opinion. Every opinion is different, just as every autism diagnosis is different. I’m different now too.
I think it will always be important to spread awareness to those who have no knowledge of autism. I find that still every day of every year. There are millions of people who have no clue what autism is or how it affects those who have it or live with it. There are people who are rude, uncaring, caring, concerned, misinformed, trying to be helpful, affected by it but in different ways from me, and there’s me and my son. If just one more person nurtures awareness like a seedling and gives that seedling respect it will grow into understanding instead of hate. One more ally – one less enemy.
I’m tired. Tired of petty fights within a community that is supposed to be united. Tired of hearing how we should view organizations that purport to represent those we love with autism. Tired of having my identity be that chick who talks about autism all the time.
Spring Break is over. My son returns to school. What have I learned this Spring Break? Nothing. My son is still different than all the other kids. He doesn’t talk when spoken to. When he does talk, he’s obsessing on a subject in which only he shows interest. He’s playing with toys labeled for 9-36 month old children. It’s no wonder I cannot throw away or give away old toys. He’s still trying to figure out the meaning for the ones he received six years ago.
I love him. He loves me. We live a different life. One currently involving a lot of blood draws, medication changes, regressive behavior, fear for me of what the future holds. We all go through ups and downs, sunny weather and chilly days. As we head into the rainy month of Autism Awareness, I see a lot of clouds. But I have no choice but to look past all of that, and with my blue lightbulbs and blue hair, share what I know to get a new mom, a new family, early intervention, to recognize signs and find resources in real life and not here in internet space, because regardless of how I feel, most people still need the news of what autism is and how to help children get the therapies, resources, and education to which they are entitled to make their lives easier. It still needs doing and I’m one of the ones destined to do it. So I will be blue this month, just so you know.